Hello,
I have been reading the message boards for a while now and figured it was about time for me to post something myself. My name is Dee, I am 27 years old and recently (sort of) diagnosed with ET. I originally presented to a hem/onc in 1999 with an elevated platelet count. He just blew me off at the time. Recently, my PCP (I've sinced moved into a different state) referred me to another Hem/Onc. I have had platelet counts between 4-600,000 since 1999. I've been on Hydrea and asprin for 2 weeks now. So far so good... little nauseous in the morning, but other than that, the only thing that really bothers me is the constant exhaustion. (but to tell the truth, I've been tired for about 2-3 years now, so I don't think that has anything to do with the Hydrea).
I wanted to see if anyone has any data regarding life expectancy in young people with ET? I've done alot of digging in medical archives (I'm lucky because I have access to ALOT of medical info, I work for a large medical research hospital)... what I've come up with is: life expectancy is about the same as the general population, or 10-15 years. It's the latter that concerns me. I'm 27. I've probably had this since at least 1999.... so that would put me at about 9 years with this. Kind of a scary thought. Well, I'll stop rambling for now, but any information anyone can provide is greatly appreciated.
Thanks,
Dee