sideroblastic Anemia

[katiemarshall]

Does anyone have sideroblastic anemia or know of anyone that has that??? My 4 1/2 year old daughter has it.

[leduck]

Hi, Katie.

My mother and both brothers have genetic sideroblastic anemia-- they were diagnosed in 1998.

Leah.

[koyotekathy]

I would like to suggest that you go online to Mayo Clinic where they have a long post about SA, including the possibility that Vitamin B6 may help. There are also several other sites with similar information, including our own Association's.

My husband has Refractory cytopenia with multilineage displasia with ringed sideroblasts. He heard about taking Vitamin 6 at the AA/MDS conference in 2005 and started taking it. It has definitely almost completely stopped the decline in his blood counts. If you do decide to try this, don't overdose as it can cause some side effects, including in his case, severe nose bleeds.

Best wishes.

[lisa60]

Originally Posted by katiemarshall

Does anyone have sideroblastic anemia or know of anyone that has that??? My 4 1/2 year old daughter has it.

My 9 year old son has sideroblastic anemia. HE was diagnosed at 6 weeks old and has been blood transfusion dependent since then. Is your daughter blood transfusion dependent?

[Neil Cuadra]

Hi lisa60.

katiemarshall hasn't been around these forums since her message over 2 years ago, so she may not see your question.

There's a post by "leduck" (Leah) above too. The last we heard, Leah's brother David was transfusion dependent. He's in his early 50s and has had sideroblastic anemia for more than a decade.

How often has your son needed transfusions? Has he had any other form of treatment?

[lisa60]

My son gets transfusions every 3 weeks. So far, we have had no other treatments except for we do take exjade for iron overload. They have discussed a bone marrow transplant with us but would like to wait until he gets a little older since he has no siblings.