A little bit about me
My name is Jaymee-Lee, I am from Victoria, Australia and am 16 years old. I wanted share my story with you so that other kids my age and also anyone else that wants to read it can. Ok, so here it is…
I was diagnosed with this stupid blood disorder when I was 13 years old. I was in year 7 when all this shit started. So, one day I realised a weird rash on my body and to be honest I thought my mum had started using new washing powder and I was having a reaction from it. I later found out that she didn’t even start using new washing powder (oops!) This rash didn’t look aggressive or anything. It just looked like little red dots and they were mainly found in clusters where my clothing was tight. I had this rash on and off for a few weeks and because it kept going away I just forgot about it. Then one day, I started to break out in bruises as well.
My mum decided to take me to the doctors to get the rash and bruises checked out. The doctor thought it was nothing, but told me to get a blood test anyway. 2 o’clock the next morning we got a phone call from my GP telling us that I need to go to the hospital immediately as my platelet count was only 4,000. The doctor’s main worry was that he was hoping my white blood cell count hadn’t dropped as well because you know what that could mean. Of course, by this point I was completely shit scared and not even sure if it was even happening or just a dream since I had been woken up so early.
When we got to the hospital I had another blood test which showed my platelets had now dropped to 2,000, but thankfully my white blood cell count was fine.
I think the weirdest part about this all was that I felt completely normal. The fact that I had no idea that I had had this problem or even how long I had had it for was crazy. The doctors prescribed me with prednisolone which made me put on weight, which of course is a girls worst nightmare. I hate prednisolone. For about 3-4 months the doctor would increase my dose, which would make my platelets around 30,000, but as soon as my dosage was decreased my platelets would also drop.
When the doctor finally realised that the prednisolone was useless, he decided that treating me with Immunoglobulin infusions would be the next best idea. These weekly infusions had the same effect as the prednisolone- my platelets would rise for a day and then drop back down again. This treatment was also useless.
I was then having rituximab infusions. After 4 weekly doses of rituximab my platelets had shot up to around 150,000 which is where they were meant to be. Ever since then my platelets have remained in the normal range. I have been in remission for just over a year and a half now and hopefully for much longer.
Also, my mum had been diagnosed with ITP when she was 16 years old and ended up having a splenectomy as that was the last resort for her back then. But the thing is ITP is not known to be hereditary, so maybe it actually is!
I think the worst thing about having ITP is that it is an invisible disorder (even I didn’t know I had it) and none of the kids my age could understand it, which really sucked. Trying to explain to them why I couldn’t play sport with the rest of my class or why I had to quit basketball or why I had to take lots of medication or have lots of days of school was really hard because no one really understood. That’s why I want to share my story for the young teenagers out there that are going through or went through the same thing as me because I actually do know what they’re talking about.