hi my name is melissa I'm 31 years old and i come from N.Ireland.
I've been in partial remission from pnh for about 8 years. I first
got it when I was 9 years old and as you well know its rare so my
docters weren't looking for it especially as i was so young. I was
the only person in ireland and the uk maybe even Europe with the
diease at that time and for years my parents and i only knew of one
person with it from new Zealand. I grew up with the diease an going
to hospital was my way of life. I had to get blood transfusions every
6 wks. Then 8 years ago my bonemarrow started to fail my docter gave
the chose of a transplant or ALG which comes from horses. Anyway i
got alg and haven't looked back i still take warfin for clotting and
still go for check up because i still have pnh cells in my body and my
doc doesn't know if i'll stay like this or if it could get worse again
but i'm positive it will be fine. I just i'd tell my story to let you
no that there is hope onthem sick days. bye for now mel