My Purple Patch

Living with ITP

GENERAL DISCLAIMER

 This blog and website (and indeed my book My Purple Patch - Living with ITP) tells the story of my own, personal experience with the auto immune illness ITP (Immune Thrombocytopenia ). It should not be assumed that any of my experiences, symptoms, treatments or any of the responses to them or any of the side effects I have encountered, will apply to other ITP sufferers.

We are all different, we all show different symptoms, respond differently to the various treatments and encounter different side effects. In no circumstances should anything I mention be taken as medical advice, and as ever, each case of ITP should be discussed with the individual's doctor, specialist or healthcare professional .

Always seek the advice of a healthcare professional if you have any concerns about your ITP or general health whatsoever. The worst thing to do is ignore any symptoms you may have. If in doubt, get checked out !

VIDEO DIDN’T KILL THE RADIO STAR !

As many people who read this blog will know, my garden has truly been a saving grace for me during my 14 ITP years . Even more so during the last 3 months or so during the Covid-19 lockdown, when I have been on the “shielded” list. Getting out into the garden to create our own little Eden has been a wonderfully constructive and positive way to relax, unwind, get some exercise and fill our plates too.

Anyway, I thought that I would send in an account of my gardening in lockdown to the BBC Lockdown Upload Project - https://www.bbc.co.uk/programmes/p07xtgyr . The Upload Project is a great platform for the many creative works that people have been engaging in during the Covid-19 crisis. It has created an outlet for us all to hear the many positive stories from across the country be they poems , pieces of music, prose, extracts from blogs like my own or just accounts of the day to day experiences of people living through these strange times.

I was delighted to contribute an extract from this blog to the project and I sent it in to my local radio station at BBC Berkshire. I honestly did not expect to hear anything further about it. However, on Wednesday last week I received a lovely message from Alex at BBC Berkshire. He asked me if I would be willing to appear on the radio for a chat about my blog, my garden and how it has helped me through my ITP years and the current Covid-19 lockdown.

Having made numerous training videos in my working life and having featured in a video for the ITP Support Association as well as making a number of presentations to a variety of audiences about my ITP including one at the House of Commons, I have never spoken on the radio before.

So with a little apprehension I agreed to appear “live” at around 9.25pm on the Michelle Jordan show on BBC Berkshire on Thursday 25th June. I need not have worried. The whole experience was made so easy for me and although it went by in a flash, it was quite straightforward. I did have trouble hearing a few times so hesitated on a couple of occasions but all in all I really enjoyed it.

So a big thank you to Alex for inviting me onto the show and to Michelle Jordan for making me feel so at ease during our chat. Her regular evening show is a great way to keep in touch with what is happening across our lovely county and I can thoroughly recommend it. I also tune in most days, to BBC Radio London at 10am to the Robert Elms Show to catch up with all the news from my home City of London.

I have preferred tuning into radio during the current Covid-19 crisis as it has been so much more positive than TV and newspapers. Local radio especially, really does get under the skin of what is happening in our communities and focuses more on what is good & positive.

Another real benefit of radio is that you can keep working on other things (like this article) with news, music and reviews still going on in the background. Throughout this recent lockdown, there has been so much good going on, with so many ordinary people doing extraordinary things.

Our local radio stations have really done great work to tell these stories & acknowledge the fact that so many people have made incredible sacrifices to help others in difficulty during this surreal time.

A great example of how radio has focused on these stories is the “Make A Difference “ initiative …. https://www.bbc.co.uk/programmes/articles/3yrtgmkfHBbsXfQfYkJp7CF/make-a-differencen

Contrary to the generally negative picture that has been painted by so much of our main stream media, there really has been so much positivity in our communities. Overall it has better been reflected by our local radio stations. It really isn’t all radio gaga and I can certainly vouch for the fact that video didn’t kill the radio star ! Tune in and hear what is going on in your local community. It may just inspire !

For anyone wishing to listen to my radio debut, you can do so at the following link … https://www.bbc.co.uk/sounds/play/p08gg76q at 4.02.59. and for those of you who are creative please do have a look at the BBC Upload Project and consider submitting something to them.

As I have written in the past on this blog - “None of us can do everything but we can all do something “.

 

The following links may be useful for those who want further information.

 

BBC Upload Project -

https://www.bbc.co.uk/programmes/p07xtgyr

BBC Berkshire -

https://www.bbc.co.uk/sounds/play/live:bbc_radio_berkshire

Michelle Jordan - Evenings on BBC Berkshire -

https://www.bbc.co.uk/sounds/play/p08gg76q

BBC Berkshire on Twitter - @BBCBerkshire

BBC Radio London - The Robert Elms Show -

https://www.bbc.co.uk/programmes/p001d7kb

BBC Make A Difference -

https://www.bbc.co.uk/programmes/articles/3yrtgmkfHBbsXfQfYkJp7CF/make-a-difference

My blog item about gardening during my ITP years & Covid-19 -

https://itpsupport.org.uk/images/downloads/ITP%20Platelet%20JUNE%202020%2032pp%20A5%20V2%20Proof.pdf 

Our Garden - A Place for Reflection & A Great Source of Food

LOOKING forward to Another NIGHT at the MUSEUM with the AMAZING MR SOANE

Obviously during the current Covid-19 induced limbo, so much of life as we know it has had to be put on hold. Any visits to some of my favourite places have been postponed, in truth most things have been postponed.

But we can all look forward to better times ahead when we can get out and about again. I am longing to be able to travel back to my home City of London to take in some of my old haunts and some new one’s too and catch up with friends. Hopefully soon, Covid -19 and platelet counts permitting, life can start being lived more than it has been so far in 2020 ! 


On the platelet front my most recent count was 193 last Wednesday. I remain on 500mg, twice daily of Mycophenolate Mofetil (MMF) and I am likely to stay on that forever. As MMF is an immune suppressing drug it does mean that my situation vis a vis Covid-19 is complicated and I am in the more vulnerable "shielded" group.But it doesn't stop me from looking forward to getting on with life as I knew it before the start of this lock down limbo we are all in.

One of the many benefits of being a Londoner born and bred is that you get to know the nooks and crannies of the City. Down the avenues and up the hidden alleyways you can discover many off the beaten track gems. You get to know the places that not so many visitors reach. Not for me the trek to Madam Tussaud’s to see waxy works, nor the Planetarium to look at the stars. No trip to Greenwich to check the mean time and never a rider on the wheel or a climber up the Shard. Some of these are the places where many visitors go, mainly to queue and get bombarded with cheap tat. But these are not regular haunts for those of us born in the City.

 
There are so many hidden gems that the Metropolis hides under its’ bushel, so to speak. So many wonderful, lesser known attractions that are not as busy, hectic or selfie stacked. Just one of the hidden treats that London has to offer is the incredible house at numbers 12 to 14 Lincoln’s Inn Fields, the Sir John Soane Museum.

One of the most eclectic collections of artefacts ever assembled is housed in what was the former home of architect Sir John Soane (1753-1837). It displays his collection of antiquities, furniture, sculptures, architectural models, paintings – including work by Hogarth, Turner and Canaletto  – and over 30,000 architectural drawings. It’s a vast, extraordinary collection, full of curiosities and surprises.

I am fortunate to have visited the house of Mr Soane many times and it is one of the places that I cannot wait to visit again once this Covid-19 crisis is over. My last enchanting tour was made at night, when the dramatic effect that he intended his collection to make, really comes to life. Seeing the property and the incredible objects that it houses by candlelight, shows things exactly as Soane would have preferred to show them to his esteemed guests. He wanted to impress, he expected visitors to be awe struck, amazed, thrilled, teased and entertained.

Here was an incredibly complex character who lived his life in the shadow of the Enlightenment but at the birth of Romanticism. An autodidact, Soane was a driven man, self motivated and desperate to succeed . It was no surprise then that he should leave his home and collection of artefacts for the education and enlightenment of all who succeeded him. What better legacy ?


A visit to his museum really is an entrance to his World, it is a tour of his home exactly as he left it when he died in 1837 (the year that Queen Victoria came to the throne). The entire experience is fantastical yet so intimate that the visitor feels that the great man himself is still present. There is a real sense that Soane himself is guiding you around his home, gently introducing you to artefacts and treasures from every corner of the globe.

The architect Sir John Soane was born in Goring-on-Thames in Oxfordshire in 1753. He was the son of a bricklayer and came from a very humble family. He was educated in Reading and later moved to Chertsey in Surrey then aged 14, after the death of his father in 1768.


The Soane connection with Lincoln’s Inn Fields started in 1792 when he bought the house at number 12. It is important to understand that Lincoln’s Inn Fields was and still is a very desirable address. It is situated in Holborn (ironically 5 minutes from where I was born and brought up). 


At the time Soane purchased number 12 he would have been acutely aware that his new home was just a short walk from the Royal Academy at Somerset House. The same distance to the West was Freemason’s Hall and further into Covent Garden lived his friend and celebrated cockney artist JMW Turner. No doubt, Soane wanted to be at the heart of London life and all the notoriety and opportunities it brought. 


As Soane grew his collections and portfolio of work he expanded his home in Lincoln’s Inn Fields by purchasing number 13 in 1807. The properties were his home, library and practice where he entertained potential clients. But as ever with Soane he rapidly ran out of space for the huge collection of artefacts, drawings, pictures, plaster casts, Roman marbles and items from all corners of the World. So in 1812 Soane rebuilt the front of number 13 and used it to display more of his vast collection. 


After the remodelling of number 13 in 1812, Soane opened up his house to students and some magazines often referred to his home as the Academy of Architecture. However, Soane continued to collect and by 1823 more space was needed, so he bought the property at number 14 Lincoln’s Inn Fields.

In 1833 he negotiated an Act of Parliament to preserve his house and collection, exactly as it would be at the time of his death – and to keep it open and free forever to inspire and educate.  
Soane was determined to ensure that all his work and vast collection would be made available to those who succeeded him.

Perhaps he was motivated by his own humble background, maybe he was a tad vain and wanted to ensure he’d never be forgotten, possibly he was also mindful that his own sons were not interested in architecture so he reluctantly accepted that they would not want his collection.

Soane was a complex, often irascible character, so who really knows what he was thinking. He was a highly driven, determined, often irritable individual who rose from extremely humble beginnings to the very top of his chosen, self taught profession. He became one of the most important figures in architecture and one of the most influential people of his time in the London of the late Enlightenment/early Romantic period. 


A visit to the Sir John Soane Museum is indeed a rare treat and a glimpse into the complicated, often contradictory mind of the man himself. A tour of the house in Lincoln’s Inn Fields is walking through a living home . Even though the owner is not physically present, you can definitely feel his presence. By candlelight the property comes alive. You get the sense of awe and surprise that Soane wanted to play upon his guests.

The Monk’s Parlour stimulates a sensation of melancholy by the restricted space, dark colours and the church like use of stained glass to induce that introspective feel he intended. He wanted the Parlour to be a gentle satire on the then fashion for the “Gothic”. He was poking fun at the whole revival of the Gothic style and it woks beautifully. 


The house is steeped in the classical tradition of architecture and art from ancient Greece and Rome which he remained convinced should always be the foundations of any architectural education. But it also has quirkiness at every twist and turn. Some of the devil really is in the detail and you need to look carefully for some of the subtleties and humour that Soane cleverly intended.


The Picture Room contains numerous paintings and drawings including works by JMW Turner, Canaletto, and Piranesi. Undoubtedly the highlight of the Picture Room is the two groups of pictures by William Hogarth (1697-1764). The series entitled A Rakes Progress and the other called An Election are both worth the to visit the museum on their own, let alone all the other curiosities and myriad items to see in the house.


That Sir John Soane was a complicated, often conflicted man is not open for debate. He lived at a time of tremendous change and upheaval in the first industrial City known to man. The Metropolis was also the fastest growing that history had ever witnessed. To further complicate matters Europe was undergoing the tsunami of change that the French Revolution unleashed in 1789.


Like all cultural items be they paintings, drawings, music, architecture, literature, fashion, they are a reflection of the time in which they are created. Sir John Soane reflected the radically changing times and the exciting opportunities and pitfalls that those times provided. He was complicated, his times were dynamic, his collection was eclectic and it reflected many influences that he had been exposed to. That we can now share all of his collection, free of charge and enjoy and educate ourselves with some of the most important items ever produced is the most enduring legacy Sir John Soane could ever have left us. 


A night at the museum in Lincoln’s Inn Fields is a must, especially as night time is the best time to see the eclectic collection at its’ best. It is something not to be missed. Truly, it is a night to remember !  I cannot wait until the current Covid-19 crisis is over and assuming that I have enough platelets on board I can then revisit the home of the remarkable Mr Soane.

 

Useful Links …. 

 

Article from The Guardian about the Sir John Soane Museum -

https://www.theguardian.com/culture/1999/sep/13/artsfeatures.architectureweek1999

The Sir John Soane Museum by Night - 


https://www.soane.org/your-visit/soane-lates 

The Sir John Soane Museum - 

https://www.soane.org 

 




Pitzhanger Manor Sir John Soane's Country Home

https://www.pitzhanger.org.uk/about/pitzhanger-manor-gallery/

Dulwich Picture Gallery one of Sir John Soane's finest works -

https://www.dulwichpicturegallery.org.uk/about/our-architecture/

Looking Forward to Another Night at The Museum once this Covid-19 lockdown is over

NOBODY CAN DO EVERYTHING BUT WE CAN ALL DO SOMETHING

Like many people during the current, seemingly endless Covid - 19 lockdown limbo, my mood has been swinging more than Frank Sinatra in his Capitol years. One day we see an item of news or a statistic that gives us grounds for optimism, then the very next day we get something else that contradicts it, leaving us as non plussed as ever.

However, throughout this surreal period we have been able to take solace from so many examples of people, doing so much to help those who really need assistance in this difficult time. What has become apparent, (as always seems to be the case in crisis situations), is that people can do amazing things to help others. It is absolutely the case that although none of us can do everything, we can all do something.

Many of us will be familiar with some of the high profile examples of people, businesses and organisations acting selflessly for the greater good in this very strange period. Whether it be the incredible story of 100 year old Captain (soon to be Sir) Tom Moore raising £39 million for the National Health Service, or England football captain Harry Kane donating a substantial sum for advertising space for 3 charities/good causes on the shirts of Leyton Orient Football Club , there have been some remarkable acts of generosity and kindness. I have provided links to both of these stories at the end of this article.

Nevertheless, it is the less well publicised efforts that have been carried out on a completely voluntary basis by so many people that have meant so much to so many in communities across the country. Doing the simple things for those who themselves have been isolated and are the most vulnerable in this lockdown has been the stuff that has kept people going and undoubtedly saved many lives.

It is the army of local volunteers who have collected and delivered shopping or medications for the elderly or infirm confined to their homes or the neighbours who have kept a watch over others less well able in their communities to help themselves. Just making a short phone call to elderly neighbours to check on them and offer some conversation can make such a world of difference.

The Covid - 19 crisis has brought out the best in so many of us and perhaps it can signal a way for us all to live better lives as we move forward. Just maybe people can take stock of their own lives and realise that we might all benefit from being a little less selfish and just a bit more selfless.

So what has this got to do with ITP, some people may ask. Well as someone who has been on immune suppressing drugs for the last 15 years and will probably be on them for the rest of my life, I am one of those vulnerable people who have been placed on the UK Government list of those who need “shielding” ( see link ….. https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19 ).

For anyone who is not familiar with my ITP story, I have been treated with Prednisolone, Azathioprine, Rituximab and now Mycophenolate Mofetil in my 15 year ITP career. All of these are immune suppressing drugs and given our current Covid - 19 situation it does make me part of the most vulnerable group of people. Sigh !

All this means that officially I am not supposed to leave my home until the end of June at least, albeit my specialist has authorised me to attend the clinic for my fortnightly blood tests. So my situation is a little tricky but nowhere near as tricky as some other folk might find themselves in.

Fortunately my health has been good and my platelet counts stable during this lockdown period but having support and knowing where to get more help if it is needed has been a real bonus. My specialist has also been hugely helpful in this limbo period, arranging for all my medications, as and when needed, to be sent direct to our home by courier.

So what can we take from all of this ? I believe that it is the small things that we often take for granted that really matter. The simple day to day events that we often overlook and probably forget, suddenly take on much greater significance when we get locked down. The importance of keeping in touch with those that really matter to you, be they family, friends, colleagues is one great example of this.

As we move forward with tiny, tentative steps I know that none of us can do everything, not all of us can hope to raise huge sums for charity in ways that capture national media attention. But we can all do something. We can all get in touch on a regular basis with our nearest and dearest. We can all pick up the telephone or speed dial those on our mobile phone contact list and check how they are. We can all send an email or text to make sure folk are ok. Maybe we can organise a Zoom meeting to virtually visit our family, friends or colleagues.

We can all give a round of applause to our National Health Service and key workers every Thursday evening and at the same time check that our neighbours are ok. We can all be more courteous to each other and we can all say thank you more often and be more thankful for what we do have rather than moan about what we don’t.

Perhaps more importantly, I believe that we owe it as much to ourselves, as we owe it to those who have made so many sacrifices during this limbo period, to make the best use of our time whilst we are locked down. Now I cannot decide or advise anyone else what making the best use of their time is but I know that for me it includes trying to be as constructive and positive as I can.

I have used quite a bit of my lockdown time adding to my knowledge about ITP and other autoimmune disorders, particularly how to cope with the mental as much as the physical demands that such conditions place upon us.

At this very uncertain time, I am fully aware that many people will naturally feel very anxious about the Covid- 19 situation, let alone our ITP or other illnesses. So that has driven me to revisit some old sources of information and research some new material too, on how to cope with the mental side of things. I have always thought that it is important for me to find as many ways as I can to help myself deal with the ITP conundrum and all it entails.

Of course, there is a limit to how much one can do and understand. But I have always believed that the better prepared you are, the better chance you have of enjoying the best life you can, despite the unwanted attentions of our purple interloper.

At the end of this article I have listed 4 very useful and informative sources that I have found helpful, albeit I am sure that other people will have discovered more. If anyone does have other sources they have found helpful please do share details and let me know. We are all learning every single day and as I have already mentioned before with ITP, every day is a school day.

In terms of the books that I mention the following provides a short summary of them ...

Physical Intelligence by Claire Dale and Patricia Peyton looks at how we can influence our personal and professional well being by actively managing our physiology. It provides some simple, easy to practice life hacks to show how we can improve the quality of our lives and performance by better managing the balance of chemicals in our bodies. This is essential reading for all of us in ever more stressful times. 

 Invisible Illness, Coping with Misunderstood Conditions by Dr Megan A Arroll & Professor Christine P Dancey looks specifically at how we can better cope with living with an autoimmune disease. The book does not look at ITP per se but does provide numerous examples of how we can live more productive lives despite automimmune disease. It gives many practical ways that we can better cope with our situation including simple strategies that can easily be adopted.

When the Body Says No: The Cost of Hidden Stress by Dr Gabor Mate examines the links between our mental health and overall health. It specifically examines how trauma experienced in our early lives impacts on our health in later years. The book explores numerous individual cases of people with ill health and reflects on the potential triggers for these situations which spring from events early in the life of each patient. 

These books have given me a huge amount of useful ways to deal with the mental stress of suffering from my chronic autoimmune condition and they have also got me thinking about how I might have developed the illness in the first place.

Suffice it to say that these sources are just 3 of many available so I urge people to have a look for themselves at the options out there. Nothing can actually cure our ITP but anything that can provide and contribute to a better strategy for coping with our illness can only be very welcome.

Other useful ways that I have been spending my time have been focused on our garden which I documented in my last blog post and it continues to keep us very busy and quite well fed too. I have also continued my studies with the Open University by completing a number of FREE online courses through their Future Learn resource. For anyone who has not come across this fantastic, free site here is the link - https://www.futurelearn.com

Other very important ingredients in my coping with lockdown recipe have been listening to music, tuning in daily to The Robert Elms Show on BBC Radio London to keep in touch with my home town and of course continuing with my reading at least one book per week. 

To draw this episode of the blog to a close, I would just encourage anyone reading this to try to make the best use of our time during lockdown. Make time to do constructive things and remember that the simplest of actions to help others are usually those that are the simple yet often taken for granted things. We can all do something to help someone and we can definitely do plenty to help ourselves.

None of us can do everything but we can absolutely all do something to make our own lives and other people’s lives better too.

Useful links -

ITP and Covid - 19

1. The ITP Support Association - itpsupport.org.uk/index.php... itpsupport.org.uk/index.php...

2. The Platelet Disorder Support Association - hematology.org/covid-19/cov... pdsa.org/covid-19.html

Stories of Good in Difficult Times

The remarkable story of Captain Tom Moore - https://www.youtube.com/watch?v=WDvG8BtmLLY

Harry Kane - Leyton Orient Shirt Sponsorship - https://www.bbc.co.uk/sport/football/52665809

Dealing with the Mental Stress of ITP and other Autoimmune Illnesses & Life

Claire Dale & Patricia Peyton - Book 

Physical Intelligence -

https://www.amazon.co.uk/gp/product/147117090X/ref=ppx_od_dt_b_asin_title_s00?ie=UTF8&psc=1

Dr Megan A Arroll & Professor Christine P Dancey - Book 

Invisible Illness, Coping with Misunderstood Conditions - 

https://www.amazon.co.uk/Invisible-Illness-Coping-misunderstood-conditions-ebook/dp/B00N01UASI/ref=tmm_kin_swatch_0?_encoding=UTF8&qid=1590393153&sr=8-1-fkmr1

Dr Gabor Mate - Book

When the Body Says No: The Cost of Hidden Stress

Rhonda Anderson - Article 

Dealing with Difficult Emotions After ITP Diagnosis -

https://itpsupport.org.uk/index.php/en/16-home/172-dealing-with-difficult-emotions-after-itp-diagnosis

During this lockdown period, I have tried to keep busy, just like the bees in our garden. I captured this image of our busy bees on our aliums.

KEEPING SANE IN LOCKDOWN - Starlings Scoffed my Strawberries and Slugs Scavenged my Spinach

Just after being diagnosed with ITP in 2006 , I decided that I wanted to start growing some of my own fruit and vegetables. I decreed that it would be part of my recovery and survival plan. It took me a year or so thereafter to start but, since 2008 my wife and I have been digging for victory. It has provided a wonderful antidote to my ITP and during these lockdown, limbo times it is even more helpful.

Our garden has been a great way to reconnect with nature, enjoy some fresh air, and get some exercise. Plus we have had some great fresh food and hopefully done our bit for the environment. I have learned a great deal too, not least that starlings love my strawberries and slugs regularly make a meal of my spinach.

I have leaned very heavily on a number of hobbies to divert my attention from my ITP since my diagnosis. I would heartily suggest that following hobbies and interests that you may have always had, and finding others that you have always wanted to try are wonderful ways to take your mind off the many stresses and strains of ITP. They have also helped fill the time in our seemingly endless Covid-19 lockdown.

I had always wanted to use some of our garden to start growing some fruit and vegetables. With the usual time constraints of work and myriad other excuses we had simply never got around to doing anything formal. It was only in 2007 when we got a potting shed and a green house installed that we knew that we had no option but to press ahead. It was now or never ! There would be no going back.

I had been inspired to grow some of our own food, because I remember as a young boy helping my Grandfather in his garden where he grew plenty of fresh produce. He and my Grandmother had set up a very productive  garden in their suburban house during World War 2 and they also had an allotment close by. I suppose they did have the British Ministry of Food to motivate them as it really was either grow your own or be hungry.

After the cessation of hostilities in 1945 my Grandparents continued in their garden as if the war never ended. They were very wise, they always enjoyed good, fresh food and were determined that it would underpin their lives and those of their children and grand children, including me. I couldn’t help but be influenced and inspired by them.

In Autumn 2007 whilst going through some boxes in our loft, I discovered one of my Grandfather’s old gardening books. I had forgotten that I had any of his old books so it was a huge surprise. Tucked inside the back of the book was a seed catalogue dated1959 from a company called Carters Tested Seeds Ltd. The catalogue had a few hand written notes that my Grandfather had made next to items that he had ordered. It brought a tear to my eye just to see those scribbled annotations but it was beautifully serendipitous.

The discovery of these items just seemed to confirm that it was right that I embark on my own growing project. In some ways it was like an affirmation that the time was right for me to emulate everything that my Grandparents had done before me.

So I started to make plans, in earnest, for our garden project in the Winter of 2007/8 and I have kept a garden journal ever since. I have recorded our plans, outcomes, successes, many failures and eaten some of the evidence. We have had numerous setbacks, lots of knocks, blisters and a few disasters. But it has been great fun and extremely rewarding.

The trouble with growing your own produce is that the moment you have anything remotely edible it attracts various interlopers wanting their ration too. So you have to be ready to combat the aphids, slugs, field mice, cabbage white butterflies, squirrels, hedgehogs, cats, birds and numerous plant diseases. You have to accept that you will lose some of your crop because you simply can’t ward off all of the visitors, all of the time.

We learned that our fruit could be protected by netting but nature is the best referee. Our resident hedgehog family and toads and frogs from our neighbours pond clear up our slug problem and ladybirds reduce our aphid troubles. Nature has great ways of helping you out when it helps itself !

The whole enterprise has been great fun, albeit hard work. You really do only reap what you sow in this annual garden game and you never stop learning. There is always something new to try or a different pest that we hadn’t expected, suddenly materialises. Then of course, there is the weather ! The most important lesson is to grow things that you really like and will actually eat. Temper all of this by making sure you grow produce that you know does well in your garden. Learn from previous mistakes but don’t be afraid to have a go.

I am comforted by remembering something that my Grandfather once told me when I was much, much younger. It went something like this… “If you eat locally produced food, when it is in season, prepare it simply and don’t mess around with it, then you will thrive. If you eat well, then you will live well ! “ Wise words and one’s that I have always borne in mind. They are more prescient now than they were all those years ago and I think that our latest Covid - 19 limbo will push more people to look very carefully at what they are eating and where and how it is produced.

Our garden has been a wonderful distraction from my ITP over the last 13 years or so and it has had the added bonus of filling our plates, and our flower vases too. I can’t pretend that it has been free from a lot of hard work. But you have to remember that if you do nothing, then you get nothing !

During our current lockdown it has continued to be a fantastic diversion and a useful supplementary source of fresh food. Even if the starlings have nibbled one or two of our strawberries and the slugs have dined on our spinach, we still have some produce left for our plates. We are constantly reminded that our garden is not just our little patch of England, we share it with plenty of other visitors who help to make it our humble abode and their home too.

For information on ITP and Covid-19 do check out the following links...

1.The ITP Support Association - https://itpsupport.org.uk/index.php/en/

2.The Platelet Disorder Support Association - https://www.pdsa.org/covid-19.html

You simply cannot beat Home Grown - beans from our garden last Summer

Get fully BOOKED UP - Here is a selection of my favourite reads of 2020 so far, a few old one's I just had to re-read & some great new releases too .

IT WAS THE BEST of TIMES, IT WAS THE WORST of TIMES !

""It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair, we had everything before us, we had nothing before us, we were all going direct to Heaven, we were all going direct the other way " ...

Taken from A Tale of Two Cities written by Charles Dickens in 1859, this  quote could well be applied to the current Corona virus limbo we now find ourselves in. It may not quite be purgatory but, it is hardly what we expected 2020 to be. With the benefit of hindsight can we go back to 2019 please ?

Here in the UK, as in many other parts of the World, we are now pretty much in lockdown (although some are ignoring advice and/or are confused by it or just don't appreciate the gravity of the situation), trying as best we can to stop the rapid spread of this awful virus and its' devastating effects.

As someone, who is living with ITP (for almost 15 years now), currently on Prednisolone and Mycophenolate Mofetil (immune suppressing drugs), it puts me slap bang in middle of the supposedly "high risk" category of people who may potentially contract Coronavirus (see links at the end of this article). I am in the eye of the perfect storm or at least I could be if I leave the house.

Following the UK Government announcement yesterday (Sunday March 22nd) it would seem that as a patient on immune suppressing drugs I am going to be advised to stay at home for at least the next 12 weeks. I am to be SHIELDED - (see link - https://www.bbc.co.uk/news/health-51997151)

Apparently folk like me and many others (up to 1.50 million Britons) will be receiveing a letter or some communication from the NHS sometime before March 29th clarifying our situation. But I have already taken the decision anyway to stay at home, out of harms way. 

So as I, and many others contemplate what would appear to be an extended, indefinite, suspended period, it is only sensible that I make the very best use of that time.

As human beings we simply can't be on the back burner all the time, we are not just pending or betwixt and between creatures. We have to be active and positive. Surley that is one of the best features of the human condition.

So, what can we do to use some of our newly acquired time positively, constructively and in a way that benefits ourselves and others ?

Having the luxury of being away from the usual work loads may provide a bit of reflection time for some people and an opportunity to do things that just get overlooked or over taken in the usual course of the daily grind.

So here are a few of the things that I will be putting some of my newly acquired spare time into.

1.READING

Here is a list of a few books which I have read or re-read this year. I have tried to make it a broad church and hopefully some of the suggestions will be appealing. There are some newish books on the list and some old friends. The truth is I could have included so many others but here are just twenty for 20 so far -

1. Great Expectations - Charles Dickens

2. The Innocence of Father Brown - G. K. Chesterton

3. A Study in Scarlett - Sir Arthur Conan Doyle

4. The House of Silk - Anthony Horowitz

5. London - A Travel Guide Through Time - Dr Matthew Green

6. Dead Wake - The Last Crossing of the Lusitania - Erik Larson

7. The Foundling - Stacey Halls

8. The Stepney Doorstep Society - Kate Thompson

9.This Boy - Alan Johnson

10.The Angry Island - Hunting the English - A.A. Gill

11.The Road to Little Dribbling - Bill Bryson

12. The Beekeeper of Aleppo - Christy Lefteri

13. The Boy Who Followed His Father into Auschwitz - Jeremy Dronfield.

14. The Splendid and The Vile - Erik Larson

15. Cash - The Autobiography - Johnny Cash

16. A Cheesemonger's History of the British Isles - Ned Palmer

17. Detroit 67: The Year That Changed Soul (The Soul Trilogy Book 1) by Stuart Cosgrove

18.Being Elvis - A Lonely Life - Ray Connolly

19. Italian Ways: On and Off the Rails from Milan to Palermo - Tim Parks 

20. Ghosts of Spain: Travels Through a Country's Hidden Past - Giles Tremlett

 

2.THE GARDEN

After possibly the wettest Winter we have had in recent times here in little Britain, it is now, supposedly Spring. Our clocks go forward by an hour on Sunday March 29th at midnight, so it is officially British Summer Time from then.

So what better time to get out in the garden and start planting some seeds ?  In the current situation it will have an even bigger impact than usual. It gets you out in the fresh air and provides a little gentle exercise at the same time.

Then there is the greater benefit of actually growing some of your own fruit and vegetables. Who knows what we might need as this limbo period unfolds ? A few home grown items can only help. It should not be underestimated. Dig for Victory, remember that from WW2 ? Whatever next, make do and mend ?

Even without a garden, we can all grow a few herbs or salad leaves indoors on the window sill or in a few pots on the doorstep or balcony. It can be done. A packet of seeds costs about £2 and with a little time and effort that sum will be repaid in no time. 

PLUS ....There is nothing like home grown produce. Picking fresh raspberries from our garden on a Summer morning for breakfast is one of my greatest little pleasures. Making a fresh tomato salad or a pesto sauce for lunch having swiped the produce from our greenhouse an hour earlier, is also a great treat.

An excellent, general book for home growing for beginners is - 

RHS Grow Your Own Veg & Fruit Year Planner: What to Do When for Perfect Produce (Royal Horticultural Society Grow Your Own). 

 

3.TURN the MUSIC UP - PARTY DOWN

Dig out your old records, tapes, CD's and playlists. Music is such a great healer and takes us all to the places that we love the most. It often takes us to places that we might wish to forget too but that is another story.

Play some music that cheers, whistle while you work, sing when your'e winning, listen to the radio, tune into special Facebook concerts being broadcast by numerous artists (free of charge), check out You Tube for the many live performances from past and present. 

A couple of examples of Facebook and other "live", FREE, daily concerts -

1.https://www.facebook.com/Joestilgoeofficial/

2. https://www.facebook.com/jiveaces/

3.https://www.cnet.com/news/all-live-streaming-concerts/

 

4. LISTEN to the RADIO

This is helpful anyway as it means you are in tune with regular updates on the Corona virus news and advice. It also keeps you in touch with everything else.

My programme of choice is the Robert Elms Show on BBC Radio London, daily Monday to Friday 10am to 1.30pm and Saturday 10am to 1pm. As a Londoner born and bred the show keeps me in tune with everything about my City. You may leave London but it never leaves you !

From music, to art, architecture, books, films, theatre, events, community projects, news, and everything else it is a real gem of a show. You'd be hard pressed to find anything better on the radio.

 

5.THE OPEN UNIVERSITY - Future Learn

There are numerous 'free" online courses offered by The Open University - FutureLearn programme.

They are open to everyone, wherever you are. Just check out the following link and take your pick.

I have completed quite a few of these courses. They are a great way of sampling things that you might wish to persue in greater detail either  through a longer course or just to follow as an interest. 

https://www.futurelearn.com

 

6. DO SOMETHING CREATIVE

Blog/write/draw/paint

Whatever it is that you really love, have a go.

Take some photographs, draw, paint, write something, just keep a diary or journal, write a blog, get creative. It is so therapeutic and if nothing else, the more you do something, the better you will become at it.

Times of trouble, struggle and strife are often the most creative and productive periods we experience. No surprise that some of the most important poems, prose, architecture, sculpture , music and art was produced during and in the aftermath of WW1.

For any of us living with ITP, it is often useful to write down what we are going through just as a reminder of our current treatment/drug regime. So why not write it up in a blog or if you want to keep it private just write a journal ?

There are numerous inspiring ITP blogs and here are a few for consideration...

1.https://www.strongerwithitp.com

2. http://itpandme.com

3. http://rarecandace.com

 

7.VISIT a MUSEUM or GALLERY ONLINE

Many of the World's leading museums and galleries have fantastic access to their collections online. Just a dozen of my personal favourites are ...

1.The British Museum, 2.The V and A Museum, 3.The Sir John Soane Museum, 4.The Tate Britain, 5.The Asmolean Museum Oxford, 6.The Museum of London, 7.St Paul's Cathedral, 8.Lord's Cricket Ground, 9.The Foundling Museum, 10.The London Transport Museum, 11.The Wallace Collection, 12.The Charles Dickens Museum.

 

8.CHECK for UPDATES and SHARE 

We all need to keep abreast of the latest Coronavirus news. Whatever our medical situation we are all in need of regular updates, advice and information. 

As someone living with ITP the need for regular, reliable information is even more important, so I make no apology for re-posting the following links.....

1. The ITP Support Association on Corona Virus - https://itpsupport.org.uk/index.php/en/news/coronavirus-covid-19-news/167-coronavirus-covid-19-information-statement-from-prof-adrian-newland

2. The ITP Support Association on The NHS and Corona Virus - https://itpsupport.org.uk/index.php/en/news/coronavirus-covid-19-news/166-coronavirus-covid-19-latest-government-and-nhs-guidance

3. The Platelet Disorder Support Association on Corona Virus - https://pdsa.org/covid-19

4. The NHS on Corona Virus - https://www.nhs.uk/conditions/coronavirus-covid-19/

5. BBC - Corona Virus What Should I Do ? - General Advice on how to prevent the spread of the Virus - https://www.bbc.co.uk/news/health-51711227

6. UPDATE from the ITP Suport Association as at 17-3-2020 https://www.itpsupport.org.uk/index.php/en/news/coronavirus-covid-19-news/170-coronavirus-covid-19-updated-information-statement-from-prof-adrian-newland-17th-march-2020?fbclid=IwAR2qe0VtYtnGjOPL8hLx4pH1ipH4D11bl0jFDJ9-MUsnJO6H8MTV4LpSbgE

7. CORONA VIRUS - LATEST UPDATE FROM THE ITP SUPPORT ASSOCIATION 23-3-2020

https://www.itpsupport.org.uk/index.php/en/news/coronavirus-covid-19-news/171-coronavirus-covid-19-updated-information-statement-from-the-itp-forum-itp-support-association-23rd-march-2020 

These links are just a few of many but as always with ITP, we need to keep in mind that each case is different, we all have different medical histories and different treatment experiences and responses. 

We all need to take great care in these difficult times and there is plenty of general advice.... But as ever our ITP specialists, medical professionals, doctors are the people we need to speak to about our own individual cases. They are the people who will know our case histories and are best placed to advise us as individuals. 

 

JUST to conclude this episode of the blog and despite very tricky times, we also have to remember that -

 

 

No matter the circumstances you find ourselves in, you can still make life instead of life making you. It starts with your outlook !!!

 

 

 

 

 

 

Read more, maybe even write something - This is the desk at which Charles Dickens wrote Oliver Twist, The Pickwick Papers and Nicholas Nickleby in his Doughty Street Home in Bloomsbury

CORONA VIRUS - sources of useful information for ITP sufferers

It is especially difficult at the moment to pin down timely, sensible and helpful advice for those of us living with ITP and facing the difficulties that are presented by the current Corona Virus pandemic.

The following sources of information may be helpful for ITP folk but what I would say is that it is very important to keep an eye out for updates. The situation is extremely fluid at the moment and new information is literally being broadcast all the time.

So here are a few useful links but do watch out for the latest news and take care.

I am one of those ITP sufferers who have been taking immune suppressing drugs for the last 14 years and am still on them so it puts me in the high risk category. I am curently also having to visit the hospital for weekly blood tests so it is a little unsettling to say the least.

As ever, all we can do is exercise common sense precautions against catching any virus, cold, flu, infection. For folk like me, it is much the same as always in that I am extra vulnerable to such things and take a huge amount of care to keep myself safe.

The following links may be useful then if you have not already seen them -

1. The ITP Support Association on Corona Virus -

https://itpsupport.org.uk/index.php/en/news/coronavirus-covid-19-news/167-coronavirus-covid-19-information-statement-from-prof-adrian-newland

2. The ITP Support Association on The NHS and Corona Virus -

https://itpsupport.org.uk/index.php/en/news/coronavirus-covid-19-news/166-coronavirus-covid-19-latest-government-and-nhs-guidance

3. The Platelet Disorder Support Association on Corona Virus -

https://pdsa.org/covid-19

4. The NHS on Corona Virus - 

https://www.nhs.uk/conditions/coronavirus-covid-19/

5. BBC - Corona Virus What Should I Do ? - General Advice on how to prevent the spread of the Virus - 

https://www.bbc.co.uk/news/health-51711227

6. Latest update from the ITP Suport Association as at 17-3-2020

https://www.itpsupport.org.uk/index.php/en/news/coronavirus-covid-19-news/170-coronavirus-covid-19-updated-information-statement-from-prof-adrian-newland-17th-march-2020?fbclid=IwAR2qe0VtYtnGjOPL8hLx4pH1ipH4D11bl0jFDJ9-MUsnJO6H8MTV4LpSbgE

These sources are by no means the only ones so be aware of that and as ever if in any doubt ALWAYS talk to/consult with your ITP specialist/medical advisor/healthcare professional as they are the people who will know your own case/medical history. 

Take care folks !

SHEDDING LIGHT on where to get upto date, relaible ITP information

Many people on the various ITP social media forums/platforms ask questions about where to get reliable, up to date information about our rare condition. As more new people join our merry puprle band this is something that crops up nearly every day. I get quite a few requests, messages, tweets etc asking me directly about this very subject.

I know that when I was diagnosed with ITP back in 2006, I found it quite difficult, initially to track down the best places for information, support and advice.Luckily a kindly nurse at my hospital handed me a leaflet from the ITP Support Association and it literally changed my life.

ITP was, and is still, quite rare and even many medical professionals that I spoke to then and even now haven't heard of it. We've still got a big job to do to spread awareness !

I can assure you that the options back in 2006 were far fewer than they are now. Facebook, Twitter, Linkedin, Instagram etc were very much in their infancy so the numerous outlets of that type were quite limited.The thought of consulting somebody called Alexa or Siri would have been complete fantasy. 

There are numerous options now available. In some ways that makes things almost as tricky as there being less content around. We need to be sure, more than ever, that the information we are getting is accurate, up to date and regularly checked by ITP experts.There is just so much information but we need to be sure of the accuracy and reliability.

So for anyone, new to ITP or indeed as a reminder to all us old purple lags, the following list of sources of ITP information is the one that I would start with.

1. The ITP Support Association - UK Registered Charity established 1995 and the first support group for ITP patients anywhere in the World....

www.itpsupport.org.uk

2. The Platelet Support Disorder Association -  USA established 1998

www.pdsa.org

3.The Global ITP Network

www. globalitp.org/index.php/pat...

4. ITP in Children - The following link may be helpful specifically regarding ITP in children ....

www.itpsupport.org.uk/index.php...

5. The ITP Support Association HEALTHUNLOCKED forum - written by ITP sufferers for ITP sufferers. Currently with over 3400 people on the forum it is a lively, helpful and comforting place for all of us with this enigmatic condition. I am proud to have set it up back in 2011 and just ask that contributors bear in mind that we are looking for positivity, support and encouragement for all.....

https://healthunlocked.com/itpsupport

USEFUL REMINDER - One thing to be aware of about all of the various forums is that any content and/or suggestions, comments on any of them can never replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them. Always consult with and discuss your case in full with your doctor/specialist or medical professional before acting on anything.

If anybody wishes to follow my ITP story then please feel free to join me on Twitter and Linkedin.... 

1. MyPurplePatch Twitter - @Patch1Purple

2.Anthony Heard Linkedin - https://www.linkedin.com/in/anthony-heard-0874a4192/

 

SHEDDING LIGHT on where to get reliable, up to date ITP information

ITP - Rare But Just One of Many

As we approach Rare Disease Day on February 29th it is worth reminding ourselves just how RARE we ITP sufferers actually are.

ITP is just one of over 6000 officially recognised Rare Diseases and literally every day more such rare conditions are being discovered and recorded.

As an autoimmune illness, ITP is just one of over 80 other such conditions. ITP is not one of the most common of these illnesses and impacts an estimated 5000 people in the UK at any one time. This compares to Multiple Sclerosis for example where there are estimated to be about 100,000 UK sufferers.

In our modern World autoimmune illnesses are becoming more prevelant and the most well known one's include things like Diabetes (type 1), Lupus, Multiple Sclerosis, Rheumatoid Arthritis, Celiac Disease.

A list of the more familiar auto immune conditions is at ...

https://www.healthline.com/health/autoimmune-disorders#common-autoimmune-diseases

Because ITP is so rare it is vital to recognise the key symptoms, because like me it is possible to be suffering from the illness without even knowing it.

I had been experienceing many random, mysterious bruises and terrible fatigue for about a year before I even thought that I had any illness.

The picture that I have included in this item is one of those very sinister, random bruises that literally developed on my arm without any provocation.

This was back in 2005 and I didnt get checked out for nearly a year as I didnt know that I had a problem. Now 14 years later and plenty of water having passed under a few ITP troubled bridges, and I am a good deal wiser.

The important thing then is to know the symptoms, and if in doubt GET CHECKED OUT. Do not put things off, do not pretend that everything is ok, do not ignore the symptoms.

A full list of  ITP symptoms is available at ...

https://www.itpsupport.org.uk/index.php/en/information/itp-in-adults

More information on Rare Disease Day 2020 and how to get involved is available at .... 

https://www.rarediseaseday.org

Please do get involved. We cannot hope for change or improvements if we don't take part. We have to be the change that we seek.

#ITPAware #RareDiseaseDay #ITPSupportAssoc @ITPSupportAssoc

Other useful links ...

www.pdsa.org

www.itpsupport.org.uk

www.raredisease.org.uk

www.globalitp.org

One of the key symptoms of ITP is mysterious, random, unprovoked bruising. Here's one of mine

Rare Disease Day 2020 - 29th February - Always Tired and Bruising Like a Peach - my ITP article for the official website

ALWAYS TIRED and BRUISING LIKE A PEACH - My Article for Rare Disease Day 2020

As we approach February 29th Rare Disease Day 2020, I have written a brief summary of my ITP story for the official Rare Disease Day website. I have entitled the article Always Tired and Brusing Like a Peach because that is a perfect summary of how my ITP story began all the way back in 2005.

Nearly 15 years since then I have jumped many ITP fences and been through quite a few purple hoops. It would have been impossible to cover all of that in the brief article that I submitted for Rare Disease Day. However, I am sure that many people who read it wil recognise so much of what I have included.

The full article is available to read at the following link -

https://www.rarediseaseday.org/stories/6579

Hopefully it will help to raise awareness for our very rare, enigmatic illness and also promote understanding of rare diseases in general.

There are over 6000 Rare Diseases and more than 80 auto immune illnesses. ITP is both a rare disease and an auto immune condition of course, so the more we can do to spread awareness, the better. 

As many readers will already know, I have written my full ITP story in a book called My Purple Patch - Living with ITP , and if anyone wishes to obtain a copy in paperback or E-book version it is available at the following links -

1. In the UK - https://www.amazon.co.uk/MY-PURPLE-PATCH-Living-ITP/dp/1728761808/ref=sr_1_2?crid=N50MO8NWQRMV&keywords=my+purple+patch&qid=1580806175&sprefix=My+Purple%2Caps%2C137&sr=8-2

2. In the USA - https://www.amazon.com/MY-PURPLE-PATCH-Living-ITP/dp/1728761808/ref=tmm_pap_swatch_0?_encoding=UTF8&qid=&sr=

3. In any other country just go on to www.amazon.com and search in books for My Purple Patch - Living with ITP

 

At my latest check up and blood test last week, my platelet count was 132 !!!!

JUST A SHARP SCRATCH - and normal platelet counts.

LATEST PLATELET COUNT - 132

At my 1/4ly check up last week my platelet count was 132. 

I am very grateful that Mycophenolate Mofetil (MMF) continues to work well for me. No further check ups will be required until April 2020.

Since February 2016 MMF has kept my count at or close to normal levels (with the odd blip), and my daily dosage is to continue at 750mg per day. This is at the lower end of the suggested daily dosage but as it is working I will not be changing anything, any time soon.

From past experience I have come to accept that if our platelet count is not broken then don't try to fix it. There is no point in poking a hornets nest with a sharp stick !

For anyone not familiar with Mycophenolate Mofetil, the following link may be useful

- https://www.webmd.com/drugs/2/drug-4068-2108/mycophenolate-mofetil-oral/mycophenolate-mofetil-oral/details

 

Please Sir, I Want Some More - Some Thoughts on Food, Nutrition and ITP

PLEASE SIR, I WANT SOME MORE - A few thoughts on Food, Nutrition and ITP

Food Glorious Food & ITP - What can we eat and what should we avoid ?

At this time of year, after a Christmas and holiday season of over indulgence and with New Year resolutions to change things, it got me thinking about food, nutrition and ITP.

So here are a few simple suggestions. I have included some things that we definitely cannot eat and the list is dosed with a very big smattering of common sense.

1. Eat a good, fresh, well balanced diet as it gives your body the best chance to fight fatigue. It also helps your body in so many other ways too.

2. In a balanced diet, it is important to eat a healthy mix of protein, carbohydrates, fresh fruit and vegetables. We are all different and may have other medical issues to consider in addition to our ITP. So it is important to discuss your diet and any changes you might make with your doctor or specialist.

3. With ITP we should avoid quinine and any products that contain quinine. We also need to avoid aspirin, ibuprofen and any products that contain them. You’d be surprised at how many products do contain these things, so read labels carefully. Good examples to be aware of are cold remedies which often contain aspirin and soft drinks like tonic water and bitter lemon that contain quinine. Other products contain them too, so check.

4. In general we should consume less salt, reduce fat and lower our sugar intakes. If eating ready made meals check very carefully the levels of salt, fats and sugars included as they can be surprisingly high.

5. Drink plenty of water. This is absolutely vital as dehydration is a major cause of many health problems including kidney stones, kidney infections, urinary tract infections. Dehydration will make you feel lethargic, tired, fatigued and listless.The suggested intake of water per day is 1.2 litres which is somewhere between 6 and 8 glasses (depending on how big your glass is). During hot weather we should drink even more.

6. Avoid too much caffeine. I stick to just one cup of coffee and a maximum of three cups of tea per day. Don't forget that tea also contains caffeine albeit not as much as coffee. Remember that caffeine is in many drinks, not just coffee & tea. It is in cola, and many soft drinks. Caffeine keeps you awake and also prompts you to urinate more so dehydrating the system. It is also a stimulant and increases the heart rate amongst other things.

7. Being overweight increases fatigue and tiredness and has many other health risks like the possibility of developing heart disease and cancer. So avoid snacking and too much sugar. Cut down on fats and processed food like ready meals and take away foods such as burgers, pizza, fried chicken. You can still eat these things but they really should only be an occasional “treat” option. Eat more fresh fruit and vegetables.

8. Prepare and cook your own meals. This sounds a bit trite but it really is important. In cooking and preparing your own food YOU know what is going into it. YOU can control the amount of fats, sugars, salts that you are eating by measuring how much of it you are putting in your food.

9. Greens Greens Greens….For us ITP folk, green vegetables and fruits are essential. Consuming spinach, kale, cabbage, lettuce, broccoli, apples and pears is very helpful in boosting the health of our immune system. Greens contain plenty of Vitamins A, C, E, and K. (they help in the clotting process).

10. Alcohol - having ITP does not preclude us from drinking alcohol but the best advice is definitely to avoid over indulging and certainly do not binge drink. The problems with drinking excess alcohol are pretty well known. But for us ITP folk specifically, it impacts on our liver function amongst all the other negative things. The liver is a very, very resilient organ but for us ITP folk the health of it is hugely important. Our liver controls the production of a substance called thrombopoietin which regulates platelet production. So if we do anything to damage our liver, it will have a negative effect on thrombopoietin production and hence the platelet count is likely to suffer.

There are some very useful further links below to articles which give more information on nutrition and ITP.

1. The PDSA - Platelet Disorder Support Association in the USA - https://www.pdsa.org/diet-lifestyle.html

2. The ITP Support Association in the UK - https://www.itpsupport.org.uk/index.php/en/12-itp-research/26-can-itp-be-caused-by-something-you-eat

As a final reminder for all of us living with ITP - it is important to discuss your diet and any changes you might make to it with your doctor or specialist. The same goes for any changes you may make to your exercise regime or if you are thinking about trying alternative medicines/remedies etc. Always talk it through with your specialist before you do anything !

A HAPPY and HEALTHY NEW YEAR - welcome to 2020 !

A HAPPY and HEALTHY NEW YEAR

It is incredible to think that we are almost at an end of another year, my 13th year with ITP.

During the last twelve months my ITP situation has been all under control, thank goodness. I am well aware that I am one of the very lucky one’s who have got the benefit of a good and stable response to one of the many treatments for our enigmatic illness.

I have been fortunate to respond well to Mycophenolate Mofetil (MMF) and have had a stable platelet count ever since going onto the drug in April 2016. This year my count has been well above the 100 mark all year and most of the time over 150, so basically normal.

My MMF dosage is 750 mg’s per day and the side effects are minimal. I visit my specialist once per quarter for a check up.

The main ITP related event for me during this year, was of course, the publishing of my ITP story in book form. In July I finally published my ITP book - My Purple Patch - Living with ITP, after many agonising months of writing it, editing it, re-writing parts of it and fumbling through the publishing process.

A huge thank you to all those who have already ordered or read a copy of my ITP book - My Purple Patch - Living with ITP. The response has been amazing and it has been satisfying to know that many people have felt that it has helped them in their own battles with ITP.

Other readers of the book have also said that it has better informed relatives, family and friends a bit more about the nature of the purple beast.

Thank you to all those who have taken time to get in touch or make so many positive comments. It makes all the hours of time put into writing and editing the book, so worthwhile.

I hope that it has been informative, helpful and comforting for those who have read it, because after all, that is why I wrote the book in the first place.

As we look forward to 2020, let us hope that we all enjoy a Healthy, Happy New Year !

For anyone who has not seen or heard about my ITP book it is available in paperback or E-book via the following links -

1. The UK - https://www.amazon.co.uk/MY-PURPLE-PATCH-Living-ITP/dp/1728761808/ref=sr_1_1?crid=27S40ELF1W92W&keywords=my+purple+patch&qid=1577718102&sprefix=My+Purple%2Caps%2C667&sr=8-1

2. The USA - https://www.amazon.com/gp/product/1728761808?pf_rd_p=2d1ab404-3b11-4c97-b3db-48081e145e35&pf_rd_r=482Z5X9YJ53P7G0Z582P

3. For any other nation just go to www.amazon.com and search under books for My Purple Patch - Living with ITP.

ITP Support Association Convention London 2020 - tickets go on sale November 30th

ITP Support Association Annual Convention London 2020 bookings open November 30th

Tickets for the ITP Support Association Annual Convention go on sale on November 30th via the website at www.itpsupport.org.uk.

A long list of guest speakers has now been confirmed and includes some of the leading ITP experts from all around the World.

The event is a wonderful opportunity to learn more about ITP and hear of the latest developments in treatments, research and all ITP related news.

The day also provides a great forum to meet other people living with ITP and generally learn from each others' experiences.

Anyone, with any interest in ITP may attend the event. You do not have to be a member of the ITP Support Association to book tickets, albeit availability is limited and a sell out is expected.

I can readily confirm that I have gained so much myself from attending past ITP Support Association Conventions and I cannot recommend it highly enough.

#ITPAwareness #ITPAware #ITPSupportAssociation @ITPSupportAssoc

It is less than 100 days until Rare Disease Day 2020 - February 29th is a date to put in the diary for all of us living with ITP just one of over 6000 rare diseases.

SAVE the DATES

As we approach the end of 2019 which seems to have gone by in a flash, it is only natural to start looking forward to 2020.

Yes next year is already upon us as I was hastily reminded when I started writing items in my new diary and adding them to my iphone/pad/computer calendars.

Two definite dates to save for us ITP folk are Saturday February 29th Rare Disease Day and Saturday May 9th for the ITP Support Association Annual Convention. 

Both of these events are really wonderful opportunities for us to raise awareness for ITP and rare diseases as a whole. They also provide great ocassions for us to learn from other people who are living with our rare illness and other such conditions too.

In terms of the ITP Support Association, 2020 will mark the 25th Birthday of the UK ITP support group which was actually the first such organisation anywhere in the World for us ITP sufferers, when it was set up in 1995 by Shirley Watson MBE.

The ITP Support Association Annual Convention is open to anyone with any interest in ITP whether or not they are members of the ITP Support Association. It always features some of the leading ITP experts, researchers and health professionals. 

Perhaps more importantly it also provides a wonderful opportunity for us ITP folk to meet each other and share our knowledege, ups, downs, succeses, failures and mistakes. We all have plenty to learn for sure and we are all our own best supporters. Only we know what it is really like living day to day with this condition.

Full details of how to reserve places, price of tickets and venue directions etc for the ITP Support Association Annual Convention will be announced soon. From attending the event a number of times in the past, I can confirm that it is something that I learned so much from and I cannot recommend it highly enough.The following link provides details released so far.....

https://www.itpsupport.org.uk/index.php/en/16-home/143-the-itp-support-association-convention-london-2020

In terms of the Rare Disease Day campaign, this is an annual initiative which focuses the attention of all of the various agencies, health professionals, pharmaceutical companies, researchers, politicians and decision makers on the realities of the daily struggles of rare disease sufferers.

Details of how you can get involved in the Rare Disease Day campaign are available at the following links ....

https://www.rarediseaseday.org/article/get-involved   https://www.rarediseaseday.org/article/about-rare-disease-day 

So save the dates, it's 2020 so with hindsight you won't want to have missed out on two key events.

#ITPAware #ITPSupportAssociation #rarediseaseuk #rarediseaseday 

@ITPSupportAssoc @rarediseaseuk @rarediseaseday

 

 

 

 

An Extract from my ITP book - My Purple Patch - Living with ITP - how I ended up on Mycophenolate Mofetil (MMF)

THE MOMENT YOU KNOW , YOU KNOW, YOU KNOW ! An Extract from my ITP book My Purple Patch - Living with ITP

I have posted this item which is an extract from my ITP book My Purple Patch - Living with ITP as a number of people have been asking me about my current treatment with Mycophenolate Mofetil (MMF) and how I ended up on it. So the following extract hopefully explains it all. 

The full book telling my entire 13 year ITP story is available to order in Paperback or E-Book version via the following links -

1) In the UK - https://lnkd.in/gcKUjAF

2) In the USA - https://lnkd.in/gH74b7N

For any other country just go to Amazon.com and type in My Purple Patch - Living with ITP in books & it will bring up the paperback and E-Book option.

Here is the extract - from Chapter 13 of the book -

THE MOMENT YOU KNOW, YOU KNOW, YOU KNOW -

For us ITP folk there are certain moments in our individual purple journey's that become etched in our memories. I'm sure most of us remember the date when we were diagnosed or perhaps the date we gained remission if we have been lucky enough to achieve it. Well for me an equally memorable date is Saturday February 6th 2016. I can even remember an exact time .... 8pm .... It is the moment that I knew, that I knew, that I knew, my ITP had returned again. Somehow my inner Dr Jekyll could sense the re - appearance of the cunning, purple Mr Hyde.

Undoubtedly this was the moment that I knew it was back. The ITP jack had well and truly sprung from its' box AGAIN. Despite trying to explain a huge bruise away as a possible accident from earlier in the day, my wife and I both knew that it could be nothing else but the return of our unwelcome enemy. I suppose I should have known it as I'd been feeling quite tired over the last few weeks. But it was not just tired, it was sting like a butterfly, float like a stone, levels of fatigue. A sure sign that a purple storm was brewing.

So off my wife and I trundled to the Royal Berkshire Hospital first thing on the Monday morning February 8th at 8am. We had contemplated reporting to A and E on the Saturday evening but as I had not had any other symptoms apart from the bruise we decided to just take things easy on the Saturday evening and Sunday, then report on the Monday first thing.

We both knew what the outcome was going to be. We had trodden this same path many times over the last ten years and we arrived at the hospital with weary resignation. A blood test revealed that my platelet count was only 20 and that it had fallen from 100 since my last test only 2 weeks ago. So it was no wonder that I had started to bruise.

The next step was yet another round of Prednisolone treatment to get my platelet count back to safe levels. I had always responded very quickly to steroid treatment in the past, so we were reasonably confident that I would do so again. This would be my 5th steroid encounter in my ITP journey. So it was back on the familiar Prednisolone horse at 85mg per day accompanied by 20mg of Omeprazole.

We ITP sufferers know that the problem with the old steroid nag is that it is never a favourite because of the truly awful side effects. It might eventually get you round the course but it certainly hits most of the fences around the track. Anyway, my Platelet count responded really well and increased to 141 after the first week. However it wasn't the only thing to increase. My waist, my body mass index, my blood pressure, my chins, my weight, the speed with which I ate, the amount of food I consumed, my temper, my mood swings, my headaches, my waking up in the early hours of the morning all made unwanted gains as they are prone to do when on the steroid. Sounds familiar !

At the outset of this round of steroid treatment I made it quite clear to my specialist that I would only go back on the Prednisolone short term. This was just to get my platelet levels safe and then we would look at other treatment options. He agreed with my view and suggested the following options for our consideration....

1) Another round of Rituximab, 2) Mycophenolate Mofetil (MMF), 3) Eltrombopag, 4) N-Plate. These options were just an initial list and obviously much depended on how quickly or even if my count responded to the steroid.

Fortunately my platelet count responded well, albeit with a few blips along the way. Anyway by April 21st my platelet levels had stabilised at consistently around the 150 mark and my steroid dosage had gradually been tapering down. Now was the time to strike while the iron was hot and sneak in my new anti ITP weapon.

My specialist and my wife and I had a good discussion about what to do and when to do it. Now was the time for Mychophenolate Mofetil (MMF) to be introduced. For those not familiar with it, MMF is another immune suppressing drug which looks to raise the platelet count by slowing down the destruction of platelets. It hopefully achieves this by suppressing the immune system and its' penchant for incorrectly attacking and destroying our platelets. It has the added benefit in most cases, of fewer nasty side effects.

But as usual we have to emphasise that we all respond differently to all these treatments and all encounter different side effects to varying degrees. The MMF, like Rituximab can take 2 to 3 months to impact on the platelet count so it is important to coordinate it with any existing treatment holding the platelet count safe.

So the idea for me, was to start the MMF whilst still on the steroid albeit at a reducing Prednisolone dosage. We hoped that whilst the MMF was taking hold the steroid would prop up the platelet count. This strategy commenced on April 23rd and I started on 750 mg of MMF twice a day.

The steroid dosage slowly reduced by sensible increments each fortnight until June 25th when I stopped all Prednisolone. The Omeprazole stopped 2 weeks later. My platelet count was 169 at my blood test on July 26th. I'd had no bruising or any other symptoms since the initial bruise I got back on February 6th. I was to remain on 750 mg of MMF twice a day and no other medication.

The only side effects I had were more to do with withdrawing from the steroid (I think), than taking the MMF. I suppose with the overlap of medication it is difficult to say for sure which drug was the culprit. I suffered terrible head aches, cramp in my legs and feet, hot sweats and achy knees and legs once I stopped taking the steroid. These subsequently stopped about 2 to 3 months after ending the steroid dosage. I was delighted to see the back of the steroid once more. Unless absolutely desperate I will not ride that horse ever again.

This time on the steroid I had seemed to be less tolerant of it and I vowed that I would not put myself or my wife through it again. Hopefully the MMF would continue to prop up my platelets, without any side effects. Only time would tell, but meanwhile I was now to be checked only quarterly at the hospital. My next challenge was to get my weight, waist, BMI and diet back under control, and lose a couple of my chins.........

 

 

Copyright © 2019 Anthony Paul Heard All Rights Reserved

ISBN Number - 9781728761880

 

#ITPaware #ITPSupportAssociation @ITPSupportAssoc 

Latest check up - Platelet count 176

LATEST PLATELET COUNT - 176

At my 1/4ly check up last week my platelet count was 176. I am very grateful that Mycophenolate Mofetil (MMF) continues to work well for me. No further check ups will be required until January 2020.

Since February 2016 MMF has kept my count at or close to normal levels (with the odd blip), and my daily dosage is now 750mg per day. This is at the lower end of the suggested daily dosage but as it is working I will not be changing anything, any time soon.

From past experience I have come to accept that if our platelet count is not broken then don't try to fix it. There is no point in poking a hornets nest with a sharp stick ! 

LETS’s HAVE A RARE CONVERSATION - An Invitation from Baroness Nicola Blackwood Minister for Rare Diseases.

For all of us who live with ITP we know that our illness is just one of over 6000 rare diseases and 80 autoimmune conditions. We may be rare but I like to think of us as special. We are so special that there are only about 5000 of us at any one time in the UK who are in the purple.

However, there are over three and a half million people in the UK living with a rare illness of one kind or another. In the European Union the number of people living with a rare disease is about 30 million and the same number is estimated for the United States.

So rare diseases are not as rare as we might at first think. At some time in our lives one person in every seventeen will be affected by a rare disease. Many autoimmune illnesses are included in this list of course, and some of them are much more widely known than ITP.

Some examples of the more well known autoimmune illnesses are Rheumatoid Arthritis, Systemic Lupus Erythematosus (Lupus), Inflammatory Bowel Disease (IBD), Multiple Sclerosis (MS), Type 1 Diabetes Mellitus, Psoriasis, Grave’s Disease, Addisons’s Disease.

We are very fortunate here in the UK to have the National Health Service (NHS) to provide excellent care and without their support, advice and treatment I would not have been able to cope as well as I have done with my ITP since diagnosis in 2006. Obviously my family and friends have also been another major factor in me negotiating the purple mine field. I have been very fortunate and I count my blessings every day.

We all have plenty of tales to tell about our own ITP or rare disease journey. Many people reading this blog will have seen that I have recorded my good, bad and ugly ITP moments in my book My Purple Patch - Living with ITP . But that is just my story and it only makes up a part of the overall rare disease anthology.

My purple story is only one of 5000 ITP stories taking place in the UK right now and it is a tiny fragment of the three and a half million rare disease tales across our country. But all of our stories matter and talking about them can only serve to help us all and assist those trying to find answers on our behalf.

We now have a wonderful opportunity, here in the UK, to contribute to a National Conversation on Rare Diseases as we have been invited by Baroness Nicola Blackwood the Minister for Rare Diseases to tell her all about our rare journey(s).

Whilst feeding back our experiences won’t change things overnight, it will certainly help those in places of influence to better understand what we really need, all the things we go through and the many hurdles that we have to overcome.

We are all familiar with the common problems like the difficulties in getting diagnosed, a lack of medical professionals who have even heard of ITP, a shortage of parking at hospitals, high cost of fees if and when we can park, the inconvenience of having appointments cancelled at the last minute, not being seen on time, the financial implications of taking time away from work, the impact on mental health of living with a rare illness, the stresses and strains that our rare illness places on our family, friends, work colleagues etc.etc.etc…

The list of issues is seemingly endless and different things impact different people depending on the severity of their illness, circumstances, age, employment situation, proximity to medical help, family support and so on.

Now is the time to feedback our experiences in an official National Conversation by completing the short survey which has been set up by Baroness Blackwood ( who incidentally, lives with a rare disease herself, having been diagnosed in 2013).

Taking part will require about 10 minutes of your time but it really matters. If we want things to change, we have to be the catalyst for that change !

Here is the link to the full invitation from Baroness Blackwood -

https://www.geneticalliance.org.uk/news-event/minister-for-rare-diseases-nicola-blackwood-time-to-talk/

And here is a link to the survey - https://dhsc-mail.co.uk/form/Sx1iaZDJ/12fe439d08333dcf0e23be36/

Finally, I thought that the following quote was a very good way of summing up the need for a rare disease conversation  -

"Patients and their families living with rare conditions are ‘experts by experience’. We frequently have to navigate health, social care, education and other services whilst carrying the burden of health conditions that affect everyday life. This survey is a welcome opportunity for everyone in this community to tell the Government what we face, and in doing so, to help to identify the key priorities for the framework to follow the UK Strategy on Rare Diseases." 

  Jillian Hastings-Ward, Chair of the 100,000 Genomes Project Participant Panel

#ITPAware #ITPSupportAssoc #RareDiseaseUK @GeneticAll_UK @ITPSupportAssoc @rarediseaseuk

Flashback to September 2011 - My presentation at the House of Commons during the ITP Support Association September Awareness Reception

ITP AWARENESS is not JUST for SEPTEMBER - Looking forward to RARE DISEASE DAY 2020

The annual ITP September Awareness Campaign has now come to a close after a wonderful purple tinged month. With participation and contributions from literally all corners of the globe we have once again managed to draw attention to ITP in a spectacular fashion.

A huge thank you goes to every single person who has taken even the smallest action to spread awareness of our enigmatic condition. Whether it be an ITP sufferer, family member or a friend writing a blog entry, an article, Tweeting or Facebooking about it or sporting Purple for Platelets, we have all done a fabulous job.

We can give ourselves a well deserved pat on the back and a round of applause. But, as ever, we all realise that ITP awareness is not just for September. We have a big job to keep our purple riddle at the top of the agenda.Our illness is a very rare one and we have to understand that it can easily be overlooked with many other more well known conditions receiving wider attention.

As one of over 6000 rare diseases and over 80 autoimmune conditions, we all know that ITP can easily be lost amongst so many other very worthy causes. So as we end September awareness month, we are reminded that we need to keep the focus on our condition and redouble our efforts to tell non purple folk about it. One major International campaign which can help us to keep the focus on our illness as well as other rare diseases is Rare Disease Day, which is held on the last day of February every year.

A rare disease is defined by the European Union as one that affects less than 5 in 10,000 of the general population. ITP is most definitely one of those rare diseases. There are between 6,000 and 8,000 known rare diseases and around five new rare diseases are described in medical literature each week. In the UK, a single rare disease may affect up to about 30,000 people.

The vast majority of rare diseases will affect far fewer people – some will affect only a handful, or even a single person in the whole of the UK. To put things in some sort of purple perspective, it is estimated that there are about 4000 to 5000 ITP sufferers in the UK at any one time.

One of the difficulties of estimating ITP numbers is that many people may actually be suffering with it without knowing it. For example, I was experiencing ITP symptoms (bruising and terrible fatigue) for about a year before I went to the doctor for a check up.

It is estimated that 1 in 17 people, or almost 6% of the population, will be affected by a rare disease at some point in their lives. This equates to approximately 3.5 million people in the UK and 30 million people across Europe. Building awareness of rare diseases is so important because there is no cure for the majority of rare diseases and many go undiagnosed.

We ITP sufferers all know the frustrations of and uncertainty around the fact that there is no cure for our illness, albeit we have numerous treatment options. We also understand the issues surrounding diagnosis because ITP is actually diagnosed by exclusion as all other potential causes for our reduced platelet count are ruled out before ITP is confirmed.

My own ITP diagnosis took 8 hours on a worrying Friday night in my local A and E (Accident and Emergency ) because the hospital did not have anybody on site with ITP expertise at the weekend. That is by no means as wretched as some other people’s diagnosis experiences but nonetheless it was still pretty harrowing.

Rare Disease Day improves knowledge amongst the general public of all rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases. If we don’t make any noise then frankly nobody is going to strain themselves to hear us.

So although it may seem like a long way off, please do put a note in your diaries for Rare Disease Day February 29th 2020. Check out the websites listed below to keep in touch with plans for the event and do join in.

However small your action might be, it will definitely help.There is one thing that is absolutely guaranteed and that is - IF YOU WE DO NOTHING, WE WILL GET NOTHING and WE WILL ACHIEVE NOTHING ! 

Rare Disease Day -

What is it all about -

https://www.rarediseaseday.org/article/what-is-rare-disease-day

How to get involved -

https://www.rarediseaseday.org/article/get-involved

Rare Disease UK -

https://www.raredisease.org.uk/about-us/

A Date for the Diary - The Annual Rare Disease Day Event February 29th 2020

ITP September Awareness - ONE PERSON CAN MAKE A DIFFERENCE and EVERYONE SHOULD TRY

The horrible photograph of my hand below shows the last time that my ITP relapsed. I remember the date as if it were yesterday. It was Saturday February 6th 2016. I had enjoyed 2 years and 8 months of remission from Rituximab treatment but sadly my platelet count had fallen to just twenty. I knew that my remission period was over.

The bruise in the picture was the moment that I knew that my ITP was back.I actually saw the bruise develop in front of my eyes, without any provocation. It was like watching ink spread out on blotting paper.

Since then I have been on Mycophenolate Mofetil (MMF) and it has been working well for me. Following my diagnosis in July 2006, my ITP has given me an incredibly eventful time (to say the least). Many of you will know that I have documented my entire ITP story in my book My Purple Patch - Living with ITP.

One of the main lessons that I have taken from my  ITP journey is that we all need to make more people aware of this very little known, enigmatic illness. Like most ITP sufferers, before I was diagnosed with it, I had never heard of it and frankly I really couldn't belive that I had it. 

I had actually been experiencing ITP related symptoms for at least a year before I even went to the doctor to get checked out. These symptoms  were mysterious, unprovoked , random bruising and terrible bouts of tiredness. I wish that I had recognised these symptoms earlier and got them checked.This is why we need to make other people aware of what to look out for. 

After the first 6 months of having ITP, I just couldn't really believe that I had anything as serious as that. I thought that the hospital had made a mistake. Maybe they had confused my blood test results with somebody else. Once it became clear that I really did have ITP, then I got angry.

Why me, how can I have ITP ? I had never been ill before, never smoked, never taken any drugs and always drank alcohol at very limited levels. I had lived my first 46 years without ever being in a hospital for anything other than a few stitches from football/soccer related injuries.

Well, so what ? ITP does not care much about who it chooses and when. Unfortunately it can develop in anyone at anytime at any age and in any ethnicity. Although we do know that it does occur more in women than men.

In short, ITP is not terribly fussy. ITP is a rollercoaster ride, a complete riddle and it can be difficult getting the right treatment. In adults it is definitley more stubborn than in children, as it tends to be seen off (often without treament), as suddenly as it appears in many children. In adults it is quite difficult to see it go into spontaneous remission but there are definitley grounds for optimism.

When I think back to 2006 and my diagnosis there were far fewer treatments available for ITP (For example - TPO drugs had not been invented) very few support groups, and certainly very limited numbers of things like blogs, social media groups, vlogs, let alone research on the scale we have now. Things have improved dramatically.

BUT we cannot be complacent, it is upto us ITP sufferers to make others aware of our condition, because it is we who know what it is like to live with it day to day and we who can tell others what to expect.

If we don't tell people about ITP, then who will ? 

So please do help in this September Awareness campaign, do get involved even if it is to take just one action. 

Remember the words of the 35th President of the United States of America - 

"One Person Can Make A Difference, and Everyone Should Try"

Go on - go ahead and make a difference.

Try the following link to see what you can do -

http://www.globalitp.org/index.php

#global4ITP #ITPaware 

Other useful links - 1. www.itpsupport.org.uk,

                                  2.www.pdsa.org

 

 

My last ITP relapse came in February 2006 - here is the damning evidence.

TO JAB or not TO JAB - THAT is the QUESTION

As Summer falls into Autumn we approach that time of year when our thoughts turn to making sure we are well prepared for Winter. One of the big questions for us ITP folk is whether we should have the flu jab or not.

As usual with everything ITP, there is no absolutely definite answer regarding whether or not to have the flu jab. It is each case on its' merits, and there are many factors to consider before deciding what is best for each individual.

So my specialist discussed the flu jab with me and our conversation was structured around the following questions.....

1. What type of work do you do ? Is it office based where you may be in contact with lots of people, so potential exposure to flu's, colds, viruses is higher ?

2. How do you get to work? Do you commute on a packed train or London Underground for example ? If this is the case, you will also be more vulnerable to illnesses.

3. Do you have any other medical conditions ? Asthma, bronchitis, diabetes, heart problems.

4. Do you take any other medication and what other medications have you taken in the past ? So for people like me who had received Rituximab, Prednisolone and Mycophenolate Mofetil (all three immune suppressing drugs), this is very important.

5. Have you got any children as they also tend to bring viruses, colds, flu's home from school quite often ? Do you work with children, teaching, lecturing, child minding ?

6. Do you work long hours, night shifts ? This might weaken your resilience to flu, viruses, infections etc.

7. Do you eat a healthy diet ? Make sure it contains plenty of fresh fruit and vegetables and plenty of water.

8. Age... the older you are, the more vulnerable you are.

So plenty to consider and yet another example of ITP simply not having one size fits all answers.

As I seem to fall into a relatively low risk category as far as being likely to contract flu, I have decided not to have the flu jab. In fact I have never had the flu jab either pre purple or since my ITP diagnosis in 2006.

I do not work in an office and I am fortunate to work most of the time from home. I do not have any train journeys or awkward commutes on London Underground or buses to endure. I have nothing but my ITP for medical trouble.

Now on the negative side, I am taking an immune suppressing drug - Mycophenolate Mofetil and I have done since April 2016. Before that I had been on immune suppressing drugs since 2006 what with 5 rounds of Prednisolone and 2 bouts of Rituximab. So obviously I am more vulnerable to infections, viruses, bacteria, colds, flus and all sorts.

But I lead an otherwise very healthy life. I eat a sensibly balanced diet, get plenty of rest when needed and avoid situations where bugs might prevail.

Ironically the most vulnerable situation I ever place myself in is when I visit the hospital for my quarterly check up. Because there are always so many people at the hospital,  crowded into quite small waiting areas and it is usually far too hot, you couldn’t wish for a better (or should it be worse) place to get bugs.

However, on balance I have decided that my flu risk is pretty low or at least as low as I can make it. That view has turned out to be correct for me, so far, but as ever with ITP I re-emphasise that we are all different so it's a decision for each individual to do what they feel is best.

A very useful general guide to ITP and vaccinations is available at -

https://www.itpsupport.org.uk/index.php/en/vaccinations-and-itp

More specifically the flu jab is covered at -

https://www.itpsupport.org.uk/index.php/en/16-home/43-influenza-vaccine-and-itp

The bottom line is that it  is best to talk your own case through with your specialist/doctor and then make your decision. You have to do what is right for you but make your decision having discussed it with medical professionals that know you and your medical history.

In this day and age it really is all too tempting to google with your health. But do not leave it to Siri or Alexa, speak to a specialist and make an informed decision.

TO JAB or not TO JAB - As Summer falls into Autumn it's time to consider the flu jab

The E-Book version of my ITP book My Purple Patch - Living with ITP is now available .

My Purple Patch - Living with ITP - E - Book version now available

The E - Book version of my ITP book - My Purple Patch - Living with ITP is now avaialble. Just to clarify that the E - Book has exactly the same content as the paperback version already released.

To order the E - Book the links are as follows .....

1) In the UK - https://www.amazon.co.uk/MY-PURPLE-PATCH-Living-ITP-ebook/dp/B07WZG3XZZ/ref=sr_1_3?keywords=my+purple+patch+e+book&qid=1567086683&s=gateway&sr=8-3

2) In the USA - https://www.amazon.com/MY-PURPLE-PATCH-Living-ITP-ebook-dp-B07WZG3XZZ/dp/B07WZG3XZZ/ref=mt_kindle?_encoding=UTF8&me=&qid=1567086783

For any other country just go to Amazon.com and type in My Purple Patch - Living with ITP in books and it will bring up the paperback and E-Book option. 

I have been truly humbled by the response to the paperback version of the book and am grateful to the many people who have placed orders and sent me so many positive messages.

The book raises a number of ITP related issues (and others besides) and if anyone wishes to provide any feedback or raise any questions as a follow up to reading the book, please do so at the "comments" section at the bottom of this blog. 

I can also be contacted via TWITTER @Patch1Purple 

Please also don't forget to put a note in your diaries for September 23rd to 27th as it is the annual Global ITP Awareness campaign which you can check out at www.globalITP.org. 

 

 

ITP September Awareness - Check out www.globalITP.org to see how to take part.

My Purple Patch - Living with ITP - E-Book version coming soon and a THANK YOU

MY PURPLE PATCH - LIVING with ITP - E-Book coming soon.

 

I just wanted to issue an update and say a further thank you to all those who have already ordered a copy of my book - My Purple Patch - Living with ITP.

The response has been incredible and I have been truly humbled by the orders that have come in. I am equally grateful for the numerous positive comments, messages & encouraging feedback.

E - BOOK VERSION coming soon -

I have received a number of requests from people asking if the book will be released as an E- BOOK. The answer is YES and I am finalising it now so it should be available by week commencing Monday September 9th. I will issue an update as soon as the E- Book version is actually online to buy.

What’s in the Book ? -

Many people have asked for a general outline of what is in the book and I can confirm that it contains everything about my 13 years with ITP. So you will find the following topics and a host of other subjects too…

1. ITP symptoms, what are they ? 2. How is ITP diagnosed ?

3. What treatments are available ? 4. Prednisolone and the side effects ?

5. Being treated with Rituximab and what are the issues, time scales and side effects ? 6. Bone Marrow tests, what happens, what is it like and why is it done ?

7. Azathioprine, what are the side effects, how does it work ? 8. Mycophenolate Mofetil what it does, how it works and the side effects,

9. What are the best ITP sources of information, where to look, where to get support ? 10. What do our specialists look for in a blood test ?

11. What do we actually know about ITP ? 12. Other ITP blogs, books, web sites. 13. Why did I develop ITP ? My considered opinion .

14. Old versus young platelets, what is the difference and why does it matter ? 15. Who develops ITP, does age matter ?

16. Alternative and natural remedies - what are they, are they proven to work ? 17. ITP and a trip to the dentist - what is the drill ? (no pun intended) 18. Going on holiday with ITP - flying, insurance and what to take.

How can the book be ordered ? -

A number of people have asked me to provide details/confirmation of how the book can be ordered. I have listed links at the end of this update which are to Amazon for the UK and the USA. For other countries you just enter www.amazon.com into your browser and search for My Purple Patch - Living with ITP in Books.

Where can I get in touch for further discussion or comment ?

The following link will take you to the website I have set up specifically for the book and other ITP matters ..

http://myownpurplepatch.simplesite.com

The book is available via the following Links -

1) Amazon in the UK - https://www.amazon.co.uk/MY-PURPLE-PATCH-Livi…/…/ref=sr_1_1…

2) Amazon in the USA - https://www.amazon.com/gp/product/1728761808…

3) Amazon elsewhere - www.amazon.com

ITP - Involve the Patient - Imperial College London report shows the way to engage - http://wwwf.imperial.ac.uk/blog/perc/2019/07/12/itp-immune-thrombocytopenia-or-involve-the-patient/

ITP - Involve The Patient

It was great to see that researchers at Imperial College London recognised the vital importance of taking account of the first hand experiences of ITP patients in their work.

They actively involved ITP sufferers in their research by engaging directly with them and seeking their opinions, fears and concerns. This is most definitely the way forward for any research projects. After all, the people who can really relate how ITP really is, are the ITP patients themselves.

Only we ITP sufferers know what it is like as we live with the uncertainty and enigmatic nature of our mystery condition. It is not just the fear of the illness itself but also the dramatic side effects that be unleashed by many of the treatments.

I have written many times about the mental anguish that suffering from ITP (and indeed many rare diseases) can have. I know that for the first few years of my ITP career I became much more circumspect, far less confident. Then on top of that the 5 rounds of Prednisolone added to my anxiety, as well as my chins and waistline !

I am sure that the mental impact is just as great or sometimes worse than the physical damage that ITP can do. I tried to convey this very point when I made presentations about my ITP experiences to a couple of the biggest pharmaceutical companies. It was so encouraging to know that they were interested in engaging with us patients in the grip of the illness.

It is wonderfully heartening to see this report from Imperial College and I hope that other research teams and more pharmaceutical companies follow their lead. If they want to know what ITP is really like, talk to us.

INVOLVE THE PATIENT - ITP 

Here is a link to the full article - http://wwwf.imperial.ac.uk/blog/perc/2019/07/12/itp-immune-thrombocytopenia-or-involve-the-patient/

#ITPAware #ITPAwarenewss #ImperialCollegeLondon#ITPSupportAssociation 

RARE DISEASES - The Times Newspaper supplement/pull out from July 2019

RARE DISEASES - Supplement in The Times Newspaper

For those who may have missed the excellent supplement/pull out included in The Times newspaper in mid July, the link at the end of this piece will take you to it. There are a number of very interesting articles which are especially pertinent to us ITP sufferers.

As we know ITP is just one of somewhere between 6000 and 8000 officially designated rare diseases, so it is useful to remember that we are just one of a vast number of rare conditions. 

ITP is an autoimmune condition of which there are over 80, so it puts things in perspective a bit to know where ITP is located in the wider scheme of things.

From The Times supplement/pull out, I thought that the articles about rare diseases and mental health , and diagnosis just being the start,  were most interesting for us ITP sufferers. 

The link is  - https://www.raconteur.net/rare-diseases-2019

 

 

MY PURPLE PATCH - Living with ITP - Book update and THANK YOU

MY PURPLE PATCH - LIVING with ITP - Book Update

I just wanted to say a big thank you to all those who have already ordered a copy of my book - My Purple Patch - Living with ITP.

I have been truly humbled by the orders that have come in and equally grateful for the numerous positive comments, messages & encouraging feedback.

A number of people have asked me to provide details/confirmation of how the book can be ordered. I have provided links at the end of this update which are to Amazon for the UK and the USA. For other countries you just enter www.amazon.com into your browser and search for My Purple Patch in Books.

At the outset of the entire project, the purpose of writing the book was actually threefold.

Firstly, I saw it as an opportunity to share my ITP experiences so as to better prepare other ITP sufferers for some of the things that they might encounter. If one person can benefit from any of the lessons that I have learned, then I will be content.

Secondly, I hoped that it would help to spread awareness of our little known, enigmatic illness.If we don't tell people about it , then who else will do so ?

Thirdly, and perhaps a little selfishly, I thought that it would be therepeutic to get some of my own ITP experiences off my chest. It certainly has done that and in doing so it has literally been life changing.

Now that the book is out, I welcome any feedback from those who have had a chance to read it. The book raises a number of key issues about ITP and touches on many other things too.

If anyone wishes to comment on or discuss anything further then please do not hesitate to use the comments section at the bottom of this blog.

Once again THANK YOU to everyone who has ordered the book already or been in touch.Your support is much appreciated.

Links as mentioned -

1)  Amazon in the UK - https://www.amazon.co.uk/MY-PURPLE-PATCH-Living-ITP/dp/1728761808/ref=sr_1_1?crid=3SLQQ71VSEXFR&keywords=my+purple+patch&qid=1564922557&s=gateway&sprefix=my+purple%2Caps%2C128&sr=8-1

2)  Amazon in the USA - https://www.amazon.com/gp/product/1728761808?pf_rd_p=2d1ab404-3b11-4c97-b3db-48081e145e35&pf_rd_r=P93M97KBEZT7AZTKVR3B

3) Amazon elsewhere - www.amazon.com 

 

 

Living with a Rare Disease and the impact on Mental Health

RARE DISEASE and MENTAL HEALTH

One aspect of my ITP that probably rings true with other ITP sufferers is the fact that it completely knocked my confidence when I was first diagnosed. It really took the wind out of my sails and made me quite nervous and introspective to say the least.

Especially for the first 6 months after diagnosis, it made me incredibly anxious. It took me a good while to accept my diagnosis and really learn to live with my rare condition.The more I found out about it, the better I came to terms with it but at the outset it was very testing.

Now a recent report carried out by Rare Disease UK has looked at the impact of having a rare disease on the mental health of the patient, (remember that ITP is one of nearly 8000 rare diseases).

In my case I suffered quite an anxious period whilst I got to grips with my ITP. I am grateful that it did not last too long, even with Prednisolone adding to the stress. But for some people with a rare disease, including many ITP sufferers, I am sure that they will encounter far greater mental health problems.

Now, just to put things into perspective, there abpout 3 million rare disease sufferers in the UK and it is estimated that 4 out of every 10 of them will be affected by depression and higher levels of anxiety. So it is not difficult to calculate that 4 out of every 10 of that 3 million, equates to a staggering 1.2 million people.

One of the main problems in many rare diseases is that it takes so long to get a diagnosis. This clearly makes for terribly worrying times for those awaiting their fates ( and the impact that it has on the families of the sufferer should not be understimated either).

Another key problem ( one that I am sure that most ITP sufferers can relate to), is that many rare diseases show no visible signs of an illnes at all.

In ITP for example there is often a disbelief or lack of understanding from non sufferers. A standard response that we have all encountered many times is "well you don't look ill ", or "you don't appear to be sick" .

Add in the unsettling side effects of drugs like Prednisolone and the unpredictability of the illness and it is not difficult to envisage depression and high anxiety setting in.

Not surprisingly, the report concludes that it is vital to address the depression and anxiety of sufferers as it may well be a key opportunity to enhance the quality of life for rare diesease patients.

One of the main things, is recognising the mental health impact on the individual or their family in the first place. Thereafter it is a matter of keeping it on the agenda when meetings between patient and specialist take place.

It has to be remembered that in many rare disease cases (ITP included) there is no cure for the illness itself, so preventing or addressing the anxiety that might go with it can have a hugely beneficial impact on the life of the individual.

As a patient it is also vital that if we feel that anxiety, depression and our general mental health is suffereing, we talk to someone about it. Discuss it with our specialist/doctor and demand help. Leaving these things or ignoring them and hoping they will go away is just going to store up trouble.

Clearly a much sharper focus and a far more coordinated approach is needed to tackle the problems that rare diseases have on the mental health of sufferers. I am certain that many fellow ITP sufferers will recognise and understand some of the issues raised.

A link to the Rare Disease UK report is listed below as well as to the article published in a recent, special supplement published in The Times newspaper.

https://www.raconteur.net/healthcare/rare-disease-mental-health-problems

https://www.raredisease.org.uk/wp-content/uploads/sites/7/2018/07/living-with-a-rare-condition-the-effect-on-mental-health-pdf.pdf?utm_source=hootsuite

#ITPAware #ITPAwareness #rarediseases @ITPSupportAssoc @RarediseaseUK

 

I hope that my book - My Purple Patch - Living with ITP, now available to buy from Amazon , provides some comfort to fellow ITP sufferers and their families. Hopefully it also shows some of the pitfalls that I encountered and might then guide patients in the future.

MY DAY of DAY's

On this very day thirteen years ago, I was diagnosed with ITP. That July day started out as a casual visit to my family doctor because I had been feeling very tired and getting a few, random purple bruises. It ended up with me in hospital by 6.30pm undergoing numerous blood tests .

My platelet count had fallen to a miserable 4 and there were major concerns that I might have something very seriously wrong with me. After a confusing 6 hours of endless blood tests, I was finally diagnosed with ITP. I was sent home with Prednisolone, Omeprazole and Alendronic Acid. The journey had begun.

From that day on, it is fair to say that nothing would ever be the same again. To say the very least, my life had hit a crossroads and the diagnosis I received was life changing in so many ways. Since then, I have travelled an incredible journey, with plenty of ups and downs, yet with some remarkably positive experiences thrown in too.

If I had been told on that day that I would encounter what I have subsequently encountered, frankly I would not have believed it. Nor would I have thought that I would have come out the other end of it with a number of truly positive accomplishments to show for it, including completing a Certificate in Humanities and my BA degree.

For the first six months or so of my ITP journey, I simply refused to accept the diagnosis. I could not believe that I had anything like as serious an  illness as ITP . I denied it for ages and truly believed that it was a mistake. Gradually that denial turned into anger, the natural response of why me and how had it developed in someone as healthy as me ? I had never been ill before for goodness sake.

Slowly, as I learned more about the illness, I accepted that I would have to get on with living the best life that I could in spite of it. That is how I have tried to deal with it. Ultimately, what other option is there but to keep on, keeping on and making sure that we make the very best use of our time.

During my ITP odyssey I have managed to write numerous articles about my illness for various newspapers, magazines and online outlets, including a regular column for the ITP Support Association (ITP SA). I also set up the various social media platforms for the ITP SA and even made a training film for a major pharmaceutical company.

I have also made numerous presentations about my ITP, to a wide variety of audiences including an address at the House of Commons in 2011. I am only too pleased to have been able to help and hope that by spreading awareness of our enigmatic condition, we can uncover more of its’ mysteries.

I have used my own blog to document my personal ITP journey and have been motivated to write my own book about that journey to continue to inform a wider audience about ITP.

As I reach my thirteenth year with ITP, I am grateful that I have been in remission since 2016 courtesy of Mycophenolate Mofetil (MMF). Since then, my platelet levels have been normal with the odd blip.

I am well aware how lucky I am, and empathise fully with those ITP sufferers who still seek a treatment which will control their purple. It took me ten years to get to MMF and I rode the steroid roller coaster 5 times, Rituximab twice and had a disastrous week with Azathioprine.

I hope that my book - My Purple Patch - Living with ITP ,  provides some comfort to fellow ITP sufferers and their families. Hopefully it also shows some of the pitfalls that I encountered and might then guide patients in the future.

Above all else, I think that it is incumbent on any of us suffering from this illness to do all that we can to continue to spread awareness. It is such a rare condition that very few people outside the ITP community have heard of it. I certainly hadn’t heard of it before my diagnosis on this very day thirteen years ago. A lot of water has passed under the ITP bridge since then. 

Here’s to the next thirteen years !

Platelets Up !

GLOBAL ITP AWARENESS WEEK - 2 months to go

Since 2010, the month of September has seen ITP support associations and groups around the World joining forces to promote awareness of our enigmatic condition.

In 2016 the various ITP support groups united to form The International ITP Alliance to create a global voice for ITP sufferers.

The ITP September Awareness campaign this year starts this very week in 2 months time.

Below is the link to how you can join in with the campaign and help spread the word about ITP far and wide.

www.globalITP.org

Please join the global effort in September and don't forget to use the following #ITPaware and #global4ITP on any social media postings.

 

 

MY PURPLE PATCH - LIVING with ITP, available to order now on Amazon - the book telling my entire 13 year ITP story from diagnosis in 2006 to my current remission

MY PURPLE PATCH - LIVING with ITP

Many people often say that they might have a book in them. How often do you hear someone say that they ‘could write a book”, about their experiences, their life, their achievements ? Well I have never really been one of those people, at least, until ITP suddenly reared its’ ugly head, when I knew suddenly, and completely by chance, that I had a story to tell.

Until ITP I had never been extraordinary in any way or had anything worthy of relating. I was very pleased to be ordinary and happily going about my business. Nevertheless, I have always believed that if you ever have a story to tell that you think will help other people, then you should tell it. The only way that we can learn from each other and advance our knowledge is to share our experiences, good and bad.

I hope that my book will help other ITP sufferers and their families better navigate the journey that we have all been sent on. Sadly there is no standard map or guide book to get us through our individual ITP expedition. However, by telling my story I hope that it will be informative, occasionally amusing, often painful but definitely positive.  

My book entitled My Purple Patch - Living with ITP covers my full 13 year ITP story and it is now avaiable to order on Amazon in paperback.

My ITP Success with MMF

 As I approach my thirteenth ITP Birthday on July 28th, I can reflect upon plenty of incidents during my purple years. It hasn’t been a picnic by any means. I have been through the Prednisolone ringer five times, Rituximab twice and a horrible week or so with Azathioprine ( I could not tolerate it all and withdrew from it within a few days).

I am one of those ITP sufferers who have been fortunate to respond well to Prednisolone and Rituximab. With the steroid, I have obtained about 6 months remission every time that I went on it and with Rituximab, I got about 2 years and 8 months remission both times that I had it. But in February 2016, I relapsed from the Rituximab remission that I had enjoyed since Summer 2013.

So at that point my specialist suggested that we try Mychopenolate Mofetil (MMF). He was reluctant for me to undergo a third round of Ritiximab treatment. Although I had responded well to it twice already (2010 & 2013). He felt that the long term damage that it could potentially do to my immune system was not worth the risk. More long stints with Prednisolone were also ruled out. Although I responded well to it, the problems that it caused every time that I had used it on 5 occasions already, would just not be bearable again.

Most ITP sufferers will be familiar with the horrible side effects that Prednisolone can sometimes inflict on the patient, so I will not dwell on them further here, suffice to say that I was not willing to put myself through them again. In addition to the wretched side effects, long term steroid usage is also damaging for us in a number of other ways, not least in weakening our joints and bones. So MMF seemed to be a very attractive option back in 2016.

For those not familiar with it, MMF like Prednisolone, Rituximab and Azathioprine is another immune suppressing drug which raises the platelet count by slowing down the destruction of platelets. It hopefully achieves this by suppressing the immune system and its’ penchant for incorrectly attacking and destroying our platelets. It has the added benefit in most cases, of fewer nasty side effects.

As usual we have to emphasise that we all respond differently to all these treatments and all encounter different side effects to varying degrees. MMF is a drug which is most commonly used by patients who have been given an organ transplant as it works to prevent any rejection of the new organ by the patients’ immune system.

A key point to make about MMF is that like Rituximab it can take 2 to 3 months to impact on the platelet count. So I was put on a fairly low, yet gradually reducing dosage of Prednisolone initially, just to get my platelet level up and hold it whilst MMF was introduced. I reluctantly accepted that I’d have to go back on the steroid for what turned out to be six weeks. Once my platelet count was back to normal levels, MMF was introduced at a dosage of 750mg’s twice per day. It has subsequently been reduced to 500mg twice per day and that is my current dosage. I take no other drugs.

After six weeks of tapering down the steroid and getting MMF on board, my system responded well and since February 2016 MMF has been my constant companion. My platelets have settled at normal levels and even reached the low 200’s, quite regularly. I could not be more delighted. The only side effects I get are a little nausea, usually first thing in the morning, but it is not too problematic. I don’t encounter any other issues at all.

Some ITP sufferers have had equally positive responses from MMF but as ever all I can say is that like all treatments, responses vary. I continue to have excellent platelet numbers but I also keep a watchful eye out for any unprovoked bruises and am always wary about any signs of over tiredness. You have to keep a secret service like watch out for any ITP warning signs. That is the daily routine of any ITP sufferer, so nothing new there.

One very important thing to mention about MMF, is that like all immune suppressing drugs it does reduce our ability to fight off infections, viruses, bugs, colds, flu’s etc. So we are more vulnerable to illness than we otherwise might be. Like any treatment , it is a matter of measuring risk versus reward in all these things. We have to weigh up the side effects, potential problems (both short and long term) against keeping our platelet levels as high as possible and at consistent levels. A further thing to keep in mind about MMF is that it also makes us more vulnerable to skin cancer and therefore I always wear a hat in the sun and always use Factor 50 sun screen lotion. It is common sense for anyone anyway, but when taking MMF it is a necessity.

As I approach my thirteenth ITP Birthday, I can definitely confirm that MMF is the drug that best suits me. I am aware that I will probably be taking MMF from now on. However, I am grateful and realise how fortunate that I am to have found a drug which maintains my platelets at normal levels, without any of the nasty side effects. I fully understand how tricky getting the right drug for each individual ITP sufferer can be. I went through 10 years of some pretty nasty times until I was introduced to MMF, but I am thankful to have come through them.

Happy 13th Birthday to me and my ITP !

#ITPaware #ITPSupportAssociation

GENERAL DISCLAIMER

This blog and website (and indeed my book My Purple Patch - Living with ITP)  tells the story of my own, personal experience with the auto immune illness ITP (Immune Thrombocytopenia ). It should not be assumed that any of my experiences, symptoms, treatments or any of the responses to them or any of the side effects I have encountered, will apply to other ITP sufferers. We are all different, we all show different symptoms, respond differently to the various treatments and encounter different side effects.

In no circumstances should anything I mention be taken as medical advice, and as ever, each case of ITP should be discussed with the individual's doctor, specialist or healthcare professional . Always seek the advice of a healthcare professional if you have any concerns about your ITP or general health whatsoever. The worst thing to do is ignore any symptoms you may have. If in doubt, get checked out !