Thalassemia Patients and Friends
Discussion Forums => Thalassemia Major => Topic started by: pmeet on December 28, 2015, 12:26:17 AM
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Hello,
My daughter Evi (turning 5 in March) is having Beta thal major. We parents got tested for HLA match and also registered in bone marrow bank, but nothing worked out. We plan to have next child now and went through IVF cycle with genetic testing to get HLA matched minor/thal free sibling for Evi. However, on first try none of the embryos HLA matched. IVF being expensive and painful process i am not sure if we should try it again. What are your thoughts on this? Do you have any family contact who have gone through this route? Should we rather wait for Gene Therapy?
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Andy do you have any insights?
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IVF often does not work on the first try. I feel that doctors should clearly explain this to prospective parents, so that they understand there is likely to be some disappointment and added expense involved. I feel that parents should know this so they can make a proper decision in advance, and that they should be prepared to try at least 2 or 3 times. My advice, is that if you can manage it financially and physically, that you should try at least one more time. I would also suggest that you take a high dose of folate daily, 5 mg L-methylfolate, while you are trying to get pregnant. This will have a positive effect on embryo attachment to the uterus.
Gene therapy is coming but it will be at least a 5 year wait before it is available, and we do not know if it will be able to free all thal majors from transfusion. Both companies involved in gene therapy for thalassemia are very confident that this will eventually work for thal majors. So, if you decide to wait, the outlook is quite good in the long term. Along with other treatments in development, I see a future where most patients will be freed from transfusions and I see that coming within the next 20 years.
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Thanks Andy. I am facing problems getting this through insurance. Genetic tests are expensive (6k US $).
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Good luck with making a decision.
I did just do a research on pgd with hla match (ethical - law perspective). Have the doctors told you that ivf + hla has a very low success rate (but it is possible!).