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Anyone in the World ever heard of or diagnosed with Hemaglobin Sabine?
My daughter was born with an autoimmune disorder that is extremely rare called Hemoglobin Sabine. The closest other blood disorder that is similar to hers is Thalassemia and Sickle cell disease. We have had 15 blood transfusions and she's 8. Needless to say, we need some help. She is now, of course, in iron overload and cannot bare having another transfusion. Our only hope is Hydroxyurea. But I am very hesitant. The doctors say the only side effect would be her white blood cell count possibly decreasing. I was reaching out to anyone on here to see of their experiences with this medicine, particularly anyone who has a similar blood disorder as hers, to see their experience with this drug.
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I hope someone will reply soon to you. NIH- I needed to google to find out that Hemaglobin Sabine has a reason for being, but not so many have it. The hope is other diagnosis like it as you stated could be a help for your daughter. Is she being treated at any of the Research Hospitals in the US or abroad?
Welcome @suanne90 How frighting this must be for you and your little girl. This seems to be a rare autoimmune disease and I agree with @katgob in her earlier reply that seeking care at a larger research or teaching hospital for a second opinion might be a good decision. If you’re interested in Mayo Clinic, here is a link to request an appointment. http://mayocl.in/1mtmR63
To help avoid more transfusions, it sounds like your little girl’s doctors have suggested hydroxyurea. This medication has been around for decades and used to treat different types of blood conditions. We have many members in our forum who have been on the drug for years. You can find these discussion by typing in HU or Hydroxyurea in the search bar above.
However, just so you know, most of the members are much older than 8 years of age and the experiences they’re sharing aren’t necessarily relevant to your daughter’s case.
I’m not a doctor but I’ve had a very serious form of leukemia that required treatment and of course, some meds I was hesitant to take. However they worked. I know you’re concerned about giving the med to your daughter but it it helps her avoid more transfusions, it would be worth trying the meds. She can always stop if there is a side effect. The doctors may want to start with a lower amount and then increase over time.
For children with sickle cell anemia or Thalassemia bone marrow transplants have been very successful for potentially curing these diseases. Has a bone marrow transplant been suggested?
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2 ReactionsNo madam she is not, not at a research hospital
It has but the doctors say because she doesn't have a sibling for matching, the chances of a bone marrow transplant being successful is not the way to go. Thank you all very much for your input.
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1 Reaction@suanne90, There may be other options for analogous donor matches when there are no suitable family members available, such as Umbilical cord blood (UCB) transplant.
I’d really suggest having a 2nd opinion for your little girl. Bone marrow transplants can be quite successful. Often a larger teaching/research hospital can a larger range of medical capabilities. Don’t give up hope!
Here is a link to The Mayo Clinic to request an appointment if this is a possibility for you:
http://mayocl.in/1mtmR63
Do you have the opportunity for a 2nd opinion?
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