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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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It can cause her to be fertile, to have Leukemia, the list goes on and on. I read that the medicine, even taken in low doses, causes your white blood cells to proliferate creating tumors. Also, where no one else in the world, (that I am aware of) has Della's condition, no one knows for sure what could possibly happen to her. I am still undecided. That's why I thought I would reach out on here in hopes of finding someone with her condition, but it's just so extremely rare.
Hi @suanne90 - I am so sorry you and your daughter are going through this, and that I am just coming across this post now.
I was diagnosed with Hemoglobin Sabine when I was 6yo (1996) - I believe I was the 8th diagnosed/reported case in the world at that time.
I had a splenectomy in 1998, a handful of hospital stays and transfusions, and clotting issues that some doctors think might be related to Hemoglobin Sabine. Generally, I am now a relatively healthy 35yo. I’m lucky to have had some great specialists.
I did try HU in 2022, but had adverse affects (drop in hemoglobin), and it did not increase my fetal hemoglobin like they hoped, so I went off it after a few months.
I am happy to connect and share more about my experiences with this disease. I have never met anyone else with it before - sorry again to hear your daughter’s story.
Hi, may I ask how high your daughter’s ferritin level is? I experienced something similar and later discovered that excess iron in my drinking water—due to an old, partially rusty waterline—had elevated my ferritin levels. My symptoms, however, were different from those typically associated with high iron.
Hi iron levels can create many symptoms.
@dmwwm123
Oh wow
I never expected to find anyone in the United States who had the same disorder as my daughter. So glad you found me. I would love to speak with you over telephone if this is something you are open to?
@suanne90 yes happy to - why don’t you email me and I can share my phone number over email (I don’t think there’s a way to DM you on this portal).
@dmwwm123, nice of you to agree to contact @suanne90. Your email has been removed from the public forum. As a new member, you cannot yet private message a member, but you can receive them. @suanne90 can send you a private message. Learn more in the Help Center https://connect.mayoclinic.org/help-center/
I would like to point out that by sharing on the forum, your messages benefit many and we can all learn from each other and to help future members to connect with you too.
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3 Reactions@colleenyoung thanks for your help!