My life with ITP by Ria

I was diagnosed with ITP in May 2017 aged 16.

It started when I was on a family holiday in Sri Lanka, I noticed random bruises on my legs and began to have some random lightheaded spells one of which sticks in mind was at the airport on the way home, my head was spinning.

A few days after landing back in the UK I went to see my GP and explained my symptoms, as a result they did some blood tests.

I can’t recall how long it took for the results to come back but I had just got home from school when my mum rang me and kept asking me if I had had a shower and was out my uniform, the next minute my mum and dad came home from work,  this is when mum told me the hospital had rang and they needed me to go to hospital straight away.

When we got to the Children’s ward, I was told my platelets were 8 – at this point neither me or my parents knew what a platelet was or what this meant. The next 2 weeks consisted of numerous further blood tests daily along with other examinations to rule out other conditions such as Meningitis or Leukemia.

I also had to go and have my blood pressure taken daily for a couple of weeks at which point I was prescribed Prednisolone to get my platelets back up to a safe level. It took a few weeks for me to be referred to the correct specialist in Haematology and I can honestly say I wouldn’t have wanted a different Haematologist.

Over the past 7 years I have all sorts of tests carried including a Bone Marrow biopsy and hundreds of further blood tests and treatments such as Prednisolone, which I have continuously been on and off as my body responds well to it so we use it to get my platelets stable until we seek other options.

In September 2016, 6 months prior to my ITP journey, I found out I had Scoliosis and needed full spinal surgery to correct it. Therefore, I had to stay on Prednisolone for a longer term for the surgery to go ahead safely. Which thankfully it did at Birmingham’s Children’s Hospital, with the on-call Haematology team available if they were needed.

However, I ended up staying on Prednisolone for around 2 years which consequently brought side effects I wasn’t aware of before such as huge weight again, stretch marks, hair thinning and major mood changes. We then decided to try and wean off Prednisolone once they were consistently stable and they stayed within normal range for 6 months, unfortunately I then relapsed and ended up back on them which confirmed I have Chronic ITP.

Another treatment I tried was Eltrombopag a single tablet once daily which worked really well for me and kept my Platelets stable for around 18 months until I got diagnosed with bilateral Pulmonary Embolisms in May 2023 which ended up plummeting my Platelets once again as I had to commence on Apixaban (a blood thinner), unfortunately when trying to up my Eltrombopag dose it caused excruciating side effects and back pain so the decision was made to come off due to the side effects and the potential risk of clots if my platelet count went too high.

Once again, I was put onto Prednisolone and have been on it since June 2023 although now thankfully weaning off again as my most recently tripled treatment has been Rituximab which is also a drug used to treat types of blood cancer, but that has also been proven to stabilise chronic ITP.

It consisted of 4 rounds once a week for 4 weeks and although my Platelets are within normal range now we can’t be certain if it’s the Rituximab or the Prednisolone or a mix of both as it generally takes several for Rituximab to fully work, however I am feeling hopeful and praying that this does the trick or even just gives my body a break for a period of time .

Unfortunately, treatment options are becoming quite limited as I was also recently (January 2024) diagnosed with Triple + antiphospholipid syndrome (APS), which is the reason for my PE’S and some treatment to treat ITP may cause me to clot further, I have now commenced lifelong Warfarin (blood thinner) for my APS.

My life since diagnosis has generally consisted of blood tests every 1-2 weeks, clinic appointments every 6-8 weeks and any treatments in between! I have got used to blood tests as it really doesn’t phase me anymore. I have managed to continue life more or less normally by going to sixth form and university and qualifying as a healthcare professional – Operating Department Practitioner (ODP).

I have found my ITP manageable with regards to personal life and work. It is just hard to explain to people who have no idea about ITP and the problems and effects it can have, especially from being diagnosed at the age of 16 where life is supposed to begin, and you’re meant to be out having fun.

I feel like I have missed out on a big chapter of my life as the past 7 years have continuously consisted of tests and appointments but also having to turn down things because I’m physically not well enough to do it. Trying to comprehend that you have a fault in your body which will most likely never be cured is hard but I’m so thankful for my amazing family, friends and Haematologist who have all been my biggest supports throughout.

I feel my Haematologist and Haematology nurses have become what feels like an extended part of my family, they always do whatever they think is best for me but also allowing me to decide if I think it’s the right choice, allowing me to ask questions via appointment or phone and even trying to make my life easier by doing things such as booking a blood test appointment if I can’t access it myself. Having health professionals like that really does make it all so much easier and without them and their prompt decisions I probably wouldn’t be here to tell my story. However, life has become a lot more difficult since having Rituximab and being diagnosed with APS along with having Bilateral PE’s, the combination has begun to have a huge effect my life, including having to reduce my work hours in order to manage daily life and realising these blood disorders won’t go away, I just have to try and live and enjoy life as much as I can while managing them.

I have also recently made an Instagram page @autoimmunedisordersandri to document my life with both ITP and APS, along with treatment I’m having, side effects, any symptoms for both disorders and being able to connect with others going through the same. Although I have done quite a lot of research regarding my blood disorders to deal with them as best I can, I am still trying to figure life out living with two blood disorders that are connected to each other but also complete opposites – I can’t get my head around it myself so trying to explain to others is a whole other story!

I am very thankful for pages and charities like The ITP Support Association which not only supply a wide range of information about ITP but also share stories like mine where patients all over come together, making them realise they’re not alone and others are going through the same.

Love, Ria x

@autoimmunedisordersandri