My older brother and sister are both on
weekly blood transfusions which they do
themselves at home. They are both immune
deficient.
My sister started when she was 3 years old
and she is now 25. She has blood
transfusions around 3 times a week. She
also has chronic bronchitus.
My brother started when he was 14 - I
think - he is now 23 and has a daughter
and a wife. He has 1 or 2 blood
transfusions a week. He also has autism -
asperger syndrome(sp?) and sleeps on a
respirator at night for sleep apnoea.
I am classed as the "healthy" one. I have
mild immune deficieny with suspect phasic
von willi brans (sp?) which is an immune
related bleeding disorder. However I have
been told as I get older (I'm 18 now) that
I may need to begin blood transfusions...
I was just wondering if anyone had similar
stories to share..
Von Willebrand's disease is a coagulation
disorder caused by genetic defect. Genetic
defect causes lack of the Von Willebrand's
factor which is important for the blood
coagulation. This condition is treated
with crioprecipitate (blood derivate) that
contains the missing coagulation factor.
Easier forms of this disease are treated
with desmopresin or epsilon-aminocaprone
acid which stimulate production of Von
Willebrand's factor.
I don't thing that blood transfusions
would be necessary.
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This page was last updated on June 11, 2008
