Thalassemia Patients and Friends
Discussion Forums => Curing Thalassemia. Bone Marrow & Cord Blood Transplant => Topic started by: pmeet on March 23, 2014, 06:33:03 PM
-
Hi Friends,
Little Evi is turning 3 this week. She is having regular transfusions since she was 9 months old when she was diagnosed for beta major thalassemia.
We have now relocated to US (from India) for her better treatment.
We registered in Bone Marrow bank but havent had any luck with good match . 4/5 is best we got.
Doc advised her against going through , given risks involved.
We now plan to have a sibling for Evi. We decided, we are going to do a IVF with genetic prototyping to ensure HLA match with Evi. IVF has its success % and we have got like1 or 2 shots @ it given the cost involved. The embroys will be tested before hand for HLA match and mutations.
Has anyone gone this route to have matching sibling, any recommendations/pitfals?
-
Dear pmeet,
This is a very difficult topic. If successful cbt or bmt can be a miracle, but not without risks and sometimes loss of life.
The IVF process is difficult on the mother and can be very stressful, if you achieve a successful pregnancy with a healthy matched baby that can be a wonderful miracle. I won't advise you against the procedure, I only want you to be prepared.
Having matched cord blood stored is a good thing. If in the meantime gene therapy proves to be successful and safe then you may choose that route instead but it may be helpful for you to have cord blood stored as a back up.
Best wishes in whatever you decide,
Sharmin
-
Hi,
another possible option is to do a BMT using the mother as donor, even if she is mismatched (not compatible).
More information here:
http://www.curethalassemia.org/bone-marrow-transplantation-bmt/bmt-from-haploidentical-mother-to-child/ (http://www.curethalassemia.org/bone-marrow-transplantation-bmt/bmt-from-haploidentical-mother-to-child/)
Warm Regards,
Eugenio