ITP Warrior: Daisy

I was diagnosed with ITP at the age of eight. My mum first noticed something was wrong when she saw an unusual rash on my arms and legs after we returned from a family holiday to Turkey. When our local GP told us to head straight to the hospital, further blood tests revealed that I had ITP.

This diagnosis completely turned my childhood upside down, as I was told I couldn’t risk falling over or hurting myself due to the dangers of excessive bleeding and bruising. Up until then, my childhood had been very normal. I had a lovely time growing up with my brother and sister, and I had loads of friends.

I was in the first year of junior school, so I’d just started at a completely new school when I was diagnosed, and doctors basically said I should be homeschooled. They couldn’t risk me bruising or hurting myself; the fear was that I could potentially bleed to death, especially as my last blood reading showed I had 0 platelets.

I absolutely hated it. I was supposed to be going up to a new school and making new friends, but suddenly I no longer saw them. I felt like I was wrapped in cotton wool — but that was the advice they gave at the time. I remember being really upset that I wasn’t leading a normal lifestyle like all the other children my age. I wasn’t able to live the life a child should be living.

I was a massive Britney Spears fan, and one Christmas I wanted the Skechers pop‑out roller skates she was advertising, but I remember my mum and dad being heartbroken having to tell me I wasn’t allowed to rollerblade or use scooters or bikes.

After a year of being homeschooled, my parents visited a specialist in London who contradicted the advice they had previously received and encouraged them to let me live. The doctors said they’d treat the ITP with steroids and do what they could, but advised my parents to let me live normally.

As a result, I went back to school — but this came with cruel comments about my appearance on steroids. I also had to stay inside at lunchtimes to keep playground injuries to a minimum. This is where my bookworm habits were formed; I was stuck in a library full of books, which I actually loved.

Thankfully, as I progressed through my teenage years, my condition appeared to stabilize and my platelets returned to normal levels. When I was 18, I was signed off by doctors, who said I might have stable levels for the rest of my life, though there was still a chance they could drop at any time. That moment was the moment I’d been waiting for — it felt like it was over.

However, everything changed when I found out I was expecting a baby at the age of 26. From 18 to 26, I think I became complacent. I realized I was finally leading a healthy, normal lifestyle and wanted to enjoy not going to the hospital every couple of months. I really did enjoy those carefree years. But when I fell pregnant at 26, everything came back to the surface again, and I probably did more research on ITP than I ever had in my life.

Thankfully, my pregnancy went to plan, and I welcomed a healthy and happy baby daughter. I have since welcomed another baby girl and now get regular blood tests to check where my levels are.

My daughter is now the age I was when I was diagnosed, and it really makes the reality of what I went through so young hit home. It has definitely made me the person I am today — quite anxious about health, particularly when it comes to my two daughters — but I also want to shine a light for others who have children who may be diagnosed with ITP. They can go on to lead a normal life.

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