[PUNISHER 78]

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).

[excumsTrourse]

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[Quork]

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[Mcampos]

I was 18 months old when I was diagnosed with this and I am now 26 with three kids and perfectly healthy according to my doctors and I get no regular treatment for this sickness. I was told that I was cured at Ingalls memorial hospital in 1986 when I got my bone marrow transplant so there is a chance that you can be cured from this.

[Lynn Heiser]

What a breath of fresh air I got after reading your post. My son and his wife just had to rush my grandson to the hospital at 8 week of age. He is at the Best Childrens Hospital in NY. Last night the doctors told them he may have DBA. After reading all the information on this subject I was exhausted. I am praying if this is what little Brian has then I hope that he has a chance to live a long life and have children like you. Question did you have a sibling to donate the marrow? thank you for your post.

Lynn H