it wasn't so much the doom and gloom that annoyed me, but the lack of stats and context in the article! 407 with ITP compared with 4,069 without. OK. So;
“substantially increased long-term risk of infections, hemorrhagic episodes requiring hospitalization, hematologic malignancies, and mortality,”
I'd be interested how many with ITP were being treated, how well they were responding to that treatment, their counts etc etc.
And I think it should've been made more clear that what they mean is that the risk of these things is permanent rather than imminent. It does come across a bit scare-monger-y. i was diagnosed 2 and a half years ago. Did 5 months of pred and have been treated as an outpatient ever since. So far, I have not yet had any sort of infection or haemmorhage that has required hospitalisation, and last time I looked, I wasn't dead. I accept that it's statistically more likely to happen to me than someone without ITP or other medical complications, so I follow the recommended advice of steering clear of contact sports and alcohol, and I generally try to look after myself. But I am one person and there are people who have far worse symptoms than I do, and there are those who have flourishing platelet counts and are currently in remission (and long may it last for them).
For those of you who are new to ITP - have a bit of a panic (it's normal) and then calm down. There's a lot of long words and medical jargon which looks as scary as hell when you first encounter it, but before you know it, it trips off the tongue. After a while, you learn what is normal for you (or your partner/child/parent/friend), what symptoms you can keep an eye on, and when to think "yeah, time to see the haemo". Ask questions, even the stupid ones - we're a friendly bunch and there'll always be someone who's been there, done that and got the tshirt.
A lot of people live with ITP as a minor inconvenience to their otherwise long and happy lives - it's not an automatic death sentence. It's good to keep up to speed and to be realistic about what is achievable, but it's also important not to dwell on it to the point that it consumes you and you don't sleep for 7 months.
Aside from being quite tired and accident prone, my ITP doesn't really stop me doing anything I want to. I did however have a very near miss in my car a few weeks back (idiot pulled out of a side road at speed without bothering to look or slow down) and in that split second when I shut my eyes and slammed the brakes on, apart from expecting it to hurt, my main thought was "please let them find my medical ID". I have a bracelet and there's a dogtag on my car keys. it's given my parents and friends peace of mind to know that if the worst happens, paramedics will find out straight away what's wrong with me and be able to act accordingly. £40 for something which might just save my life one day isn't a huge price to pay - and it's actually a nice bracelet too! You can buy medical ID online, and get it engraved to your specification without the need for your doctor to get involved. If you think it'll help you and your loved ones feel more at ease with the ITP, then by all means get one.