A series of unfortunate events is exactly how I would describe the past couple of years of my life, this is mainly thanks to my ITP and the absolute chaos it’s brought along with it. Combined with the fact that I just naturally seem to attract chaos, these two things just make for an absolute train wreck. In recent years it's just been one disaster after another with me.
I was diagnosed with ITP when I was 6 but for the most part of my life I was lucky enough to be able to live treatment and medication free, to the point where I almost forgot that I had it. ITP isn’t curable, it doesn’t go away, but for some people they respond well to treatment and it’s very manageable to the point where they can live ‘normally’. For a very long time, I was like this, throughout the majority of my childhood and teenage years it was never something I had to deal with, I wasn’t even on treatment but still I could just ignore it and get on with my life. But now, at the age of 21, I look back at this and wish I had appreciated being able to live like this far more than I did.
My ITP has taken me for a RIDE this past year. I’m 21 now, and my ITP is worse than it’s ever been. Last May, when I should have been completing my first year of university, my ITP came straight out of nowhere and put me in hospital for the first time since I was 6 years old. It really was a dramatic comeback. For the past year I have been somewhat trying to come to terms with the fact that this is something that I have to deal with now and have to consider on a daily basis. It really is a life changing thing.
I still find it really difficult to talk about the past year of events and my hospitalisation in 2019 as it really was just such a bleak time, a period of time that I’d just must rather forget. Despite having numerous sessions with a counsellor, I still can’t fully talk about the time I spent in Northwick Park hospital without bursting into a fit of ugly crying. Which tbh is just uncomfortable for everyone. Even just the mention of steroids brings up a whole lotta built up anxiety and emotion, it’s just not an experience I ever want to relive. But, I’m hoping that being able to openly write these experiences down and just getting them out there will give me some kind of peace of mind.
As I’ve had this condition for so long, I think other people often think that I can cope with my ITP and just get on with my life, when honestly, it’s quite the opposite. I have absolutely no idea how to deal with this. I’m winging it every single day. Just ask my mates, they’ll tell you how much of a mess I am. It’s especially harder when most doctors don’t even know how to deal with ITP. No treatment is guaranteed to work and everyone responds different to each treatment. In the past year I have been trying to find a treatment that I respond well to, so far, I’ve had IVIG, Steroids (Prednisolone) and varying doses of Eltrombopag. I’m currently on 50mg of Eltrombopag which is keeping things relatively steady but still not getting my platelets as high as we hoped. Things still feel very challenging and weirdly new at the moment. I’m not sure how long it’s going to take me to fully accept this condition or the fact that no treatment may ever properly work for me, but I want to make my peace with it and not allow it to control my life.
Yikess I hate that this all sounds so dramatic! However, this is the first time in a couple of years that I’ve finally felt like I’m in a good enough place to talk about my illness. Let's be honest It’s time to share all the utter chaos and have a laugh at my expense.
P.S enjoy this photo of me looking like a pure mess in Northwick Park Hospital last June receiving my first does of IVIG. Iconic.
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