Rare Diseases Day 2017 - Tuesday 28th February
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| Shared by the ITP Support Association on Facebook 27/02/17 |
Rare diseases aren't as rare as you might think, then; and, taken collectively, they affect a lot of people. ITP is just one of the 6000+ rare diseases. Until my diagnosis in 2012, I hadn't heard of it and it - this is usually the case, though thankfully the Haematologists treating me at my local hospital had done and were able to make a relatively quick diagnosis. The consultant I subsequently saw as an outpatient also said she was no stranger to people with low (single figure) platelet counts and saw other people with my condition.
ITP blog
The author of My Purple Patch Anthony Heard has taken an active part in the the UK ITP Support Association for much of the time since his ITP diagnosis in 2006. He started writing this blog about his ITP story last summer, from around the time to the present. I'd recommend reading it on a relatively large (a 15" laptop or better) screen as it is easier to scroll down. It flows as one long river: it seems the Simple Site setup does not seem to allow for jumping (clicking) between installments.
His story differs in the details from mine - he emphasises that everyone is different, responding differently (or not at all) to various treatments. This doesn't just apply to ITP. I'll repeat his disclaimer too that anything he says should not be taken as medical advice. It goes likewise for anything I say here on this blog as ArtyTransplantee.
One of the take-home messages through reading Anthony's story is the mental hit from the condition was just as great as the physical one, and should not be underestimated. Becoming an ITPee with no pre-existing health conditions or past experiences of hospital vibes did not make it any easier.
Anthony usually ends his installments with best wishes of Platelets Up. I'll run with water and art and say:
Flow on and paint on!
