15 Years of Rare

As part of the Ataxia Aware project we are sharing personal accounts of those suffering with Ataxia or other rare conditions. We want to provide a safe space for people to talk about their experience with disability, whether themselves or someone close to them.

After 15 years of living with my rare disease Immune Thrombocytopenia (ITP) I can reflect upon plenty of incidents during that time. It has certainly been eventful, to say the least. I have jumped numerous fences and dived through more hoops than I care to remember.

It all started in 2005 when I began getting random purple bruises (mainly on my arms, legs and torso). These bruises would appear without any warning or provocation and often overnight I would develop them mysteriously. Some were the size of a coin and others were as big as the lid of a jam jar. I was also suffering from acute fatigue, a tiredness that only those who have suffered from ITP or a number of other auto immune illnesses can describe. It was beyond exhaustion. The combination of random bruises and chronic tiredness eventually led me to report to my doctor for a check-up in July 2006.

Following that meeting with my doctor, a fretful dash to my local accident and emergency unit and many blood tests later, it was discovered that my platelet count was a measly 4000. A normal platelet count should be between 150000 and 400000. I was seriously ill. It took about 7 hours to diagnose my ITP, an illness that only about 5000 people suffer from in the UK at any one time.

It is most definitely rare! 

Since then, I have been on something of an ITP roller coaster, having many different treatments and suffering many wretched side effects whilst having some successes and a few failures. It hasn’t been a picnic by any means. I have been through the Prednisolone ringer six times, Rituximab twice and a horrible week or so with Azathioprine which I could not tolerate it all.

I have been fortunate to respond well to Prednisolone and Rituximab. With the steroid, I 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, in 2010 and 2013. But in February 2016, I relapsed from my Rituximab remission.

At that point my specialist suggested that we try Mycophenolate Mofetil (MMF). He was reluctant for me to undergo a third round of Rituximab as the long-term damage it could potentially do to my immune system was not worth the risk. More stints with Prednisolone were also ruled out because of the problems that it caused on 5 occasions I had used it already. The side effects would just not be bearable again. 

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 has the added benefit in most cases, of fewer nasty side effects. 

Since February 2016 MMF has been my constant companion. My platelets have settled at normal levels (apart from the odd blip) and even reached the low 200000’s quite regularly.  I could not be more delighted. The only side effects I get from MMF are a little nausea, usually first thing in the morning, and achy joints but it is not too problematic. 

Some ITP sufferers have had equally positive responses from MMF but as ever like with 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 be wary of any ITP warning signs. 

One very important thing about MMF, is that like all immune suppressing drugs it reduces our ability to fight off infections, viruses like Covid-19, 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 (short and long term) against keeping our platelet levels as high as possible at consistent levels. 

A further thing to keep in mind about MMF is that it makes us more vulnerable to skin cancer and therefore I always wear a hat in the sun and use Factor 50 sunscreen lotion. 

There is no cure for ITP, although there are numerous treatment options which can maintain a safe platelet level for the patient. Sadly, they don’t always work for some of us. Many ITP sufferers take many years to find the treatment that works for them, some never find anything, and they learn to live with low platelet counts. 

Once you have got ITP you always have ITP, sometimes it may be in remission, but it can relapse at any time. There is never any room for complacency, and I take nothing for granted.

I always remain positive about my debilitating condition and forge ahead with a purpose in everything I do. It is incumbent on all of us who are able, to tell our stories to spread awareness for our rare illnesses. This is why I am a passionate supporter of Rare Disease Day and it is also what drives to me to do voluntary work for the ITP Support Association.

As former US President Barack Obama once said – Change will not come if we wait for some other person or some other time. We are the ones we’ve been waiting for. We are the change that we seek”. 

It is up to each and every one of us, to be the change. We cannot wait for someone else!

We would like to thank Anthony for sharing his journey with us. If you would like to know more about him be sure to check out his ITP blog at https://anthonypaulh.tumblr.com Further information about ITP can be found at https://www.itpsupport.org.uk/index.php/en/ 

If you would also like to get involve and share your experience with Ataxia or other rare condition, please get into contact with us through our social media linked below:


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