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Group Description

This group is to provide information and support to individuals with Congenital Dyserythropoietic Anemia as well as their family members. There are very few people in the United States with this condition. Whether you have a mild form, are transfusion dependent or thinking about bone marrow transplant, please join the group and share your story.

For more information: 402-895-1753

This is the story of Matt, now 8 years old, and his victory with CDA. Matt was born anemic and wasn't properly diagnosed with this uncommon condition until he was 2 years old. He carried several incorrect diagnoses: anemia of the newborn,iron deficiency, spherocytosis. He was diagnosed at Texas Children's by an experienced hematologist in 2001. Matt was becoming transfusion dependent and the future seemed uncertain. I am Matt's brother and only biologic sibling. I was tissue typed and found to be a perfect match. Because of this, a bone marrow transplant was carried out. The story of the transplant is complex, but the good news is that he survived and is doing well. Matt's anemia is cured. It was a challenging time for our family, but I'm glad I could be the BMT donor. I was 15 years old at transplant time and would be happy to talk to other sibling donors who are wondering what it is like to give the gift of a better life to a brother or sister. This rare disease caused terrible turmoil and worry for our family. I would like to help other families who are struggling with this condition by providing a support network. Please share your story.

Chad

Group Information

  • 22
  • Anemia
  • Dec 27, 2007
  • English

Group Settings

  • This is a public group.
  • Attachments are permitted.
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  • Listed in Yahoo Groups directory.
  • Membership does not require approval.
  • Messages are not moderated.
  • All members can post messages.

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