On 2/18/2008
iraqvet08 wrote:
never heard of it. Although I just got diagnosed with this mpd. :( I am really sad at times, but know that I have to be strong. I am 24 years old. Male. Way too young for this. Would love to get a BMT, I'll try my hardest.
Great to find someone else that I can talk to about this. Doctor said I should take anagrelide. Haven't started yet. I am afraid that it will switch to myelofibrosis later. What do you think?
Agree, you are way to young to have this mpd and it is all the more alarming when there appears to be so little information and support out there. I was almost pressurised into taking Anagralide but decided the risks of myelofibrosis was too great to ignore. I recently changed doctors and now feel the advice I'm getting is more informed and sympathetic, so I will persevere with hydroxycarbimide and its side effects for a while longer.
I don't know whether you are in the USA or UK, but you may like to access an mpd support group website which I have found helpful and reassuring, www.mpd-support.co.uk. Its run by the Dept of Haematology at St Thomas' Hospital in London. Reading their October 2007 newsletter may be of some comfort - it helps just knowing there are others who feel equally isolated following diagnosis of so rare a condition.
I wish you well