- CASE FILE
Diagnosed with XLP at age 9. Oldest known survivor lived to 39 years old. Recently diagnosed with two other rare diseases AHUS and HLH.
ABOUT THIS CASE FILE
I was diagnosed with XLP when I was nine years old, after my 3 and a half year old brother had passed away from the disease. I have been in and out of the hospital since then. The only cure is a bone marrow transplant. However, I was recently diagnosed with two other rare diseases, AHUS and HLH. I can only receive a bone marrow transplant if I get my HLH under control. This is extremely difficult to do because of how rare the disease is. I am also in need of a bone marrow match and need help finding one.