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Anyone been diagnosed with CDA type 2 anemia or know someone who is?

Blood Cancers & Disorders | Last Active: Jun 16 12:42am | Replies (8)
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@mjha

Hi Lori, thank you for sharing these helpful resources. My brother (living in India) has been diagnosed with CDA type 2 anemia last month. Since 2023 December he is requiring blood transfusion every 2 to 3 weeks. Doctor's advice includes transfusion, T folvite 5mg, iron chelation and splenectomy. Finding blood donation is becoming increasingly difficult, currently his hemoglobin is 4.8, we are working with several volunteer organizations to find 3 units of blood he desperately needs. We are worried how sustainable it is in the long run since finding blood donation every couple of weeks is extremely hard.
Splenectomy seems scary since he is weak and diabetic. Was wondering if there are other ways to treat the enlarged spleen which in turn could alleviate the hemoglobin situation.
I have read about low dose splenic irradiation, steroid treatment, partial splenectomy as well as Apheresis however don't know if any of these are right options for my brother.
One of the articles you have shared mentions clinical trials for some drugs but don't think it is available in India.
Struggling to find the right course of action.

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Replies to "Hi Lori, thank you for sharing these helpful resources. My brother (living in India) has been..."
Lori, Volunteer Mentor | @loribmt | Jun 13 10:04am

Oh, you’re poor brother. Having a hemoglobin that low is debilitating! I’m so sorry there’s such a challenge finding the right blood type so he can get transfusions.

Unfortunately those of us in the forum aren’t medical professionals so we’re not able to diagnose and offer treatments. I have no personal experience with this type of anemia. But I’m familiar with the side effects of anemia, splenic involvement, transfusions, with an aggressive form of leukemia. I will be thinking of your brother and wishing only the best for him.

Would your brother have access to a larger teaching hospital or university? They sometimes have a much deeper bench of medical specialists who will be able to assess your brother and offer treatments for him.

Since CDA type 2 anemia is hereditary is anyone else in your family being tested or showing symptoms?

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