A friend of mine has a son..His son has Diamond Blackfan Anemia..I dont feel right asking him this question. And all the searching I have done on the net have comes up without an answer..Can someone help me out? Thanks again.. And please dont be afraid to donate blood for the needy..There are less than 1000 people in the world with this disease, and they require frequent blood transfusions..So, please again..Donate blood for the needy..Thank You|||Diamond Blackfan anemia is a diagnosis about which it is difficult to make generalizations. First, because it is rare- only about 800 cases. Second, because it probably has several different genetic causes which may vary in intensity. Third, because if often it is NOT severe enough to justify a bone marrow transplant (which doesnt always help). Fourth because in about 1/3 of cases there are other malformations which might affect the prognsosis independently. Finally, it depends upon the rate of complications from the treatment- chronic steroids and transfusions sooner or later generate complications which are seldom mortal, but affect quality of life.
That said, if you regard "life expectancy" as something more than a number, read the story of the kid in the first source. His story, over 900 gallons of blood, his life in hospital, his anger, and his attitude toward "life expectancy"- are sure to be more informative than a date.
If you really do need a number, it can be said that most patients live to adulthood now (but formerly did not due to the effects of iron overload from transfusions).|||The above comment is right on. I'm 26 and have and will most likely die from organ failure due to iron overloads in my middle age than from the disorder itself. But growing up and seeing other kids with it I know I have it very mildy and that some of those kids probably haven't been alive for a whil
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