Discussion Forums > Thalassemia Major

Again!

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Sharmin:
I know of a similar case.  This little boy was transfused on the same day as my son last year.  His DNA suggested that he was major but he (a 5 year old at the time) was only transfused 3 or 4 times.  Since his few transfusions last year he has maintained his hemoglobin - and he has not been in for a transfusion for over a year.  Surprisingly, he had one transfusion in his first year - and then a 2 or 3 when he was 5 - and none since.  I was really confused by this. 

I didn't understand how this was possible, but maybe Lauryn's case is similar to this boys.

Canadian_Family:
Yes it is true some children can maintain their hemoglobin to the age of 5 or 6 even they are diagnosed with Thal Major. We have seen two such cases in Hospital for sick children. Eventually they are on regular transfusion after 5 years. No explanation was given by doctors (I think they don't know for sure).

Thanks

Andy Battaglia:
Hi Christine,

I don't want to raise false hopes, but Lauryn is doing well so far. What I am saying is her gene mutations are a different type of mutation than many thal gene mutations and as is the same with those mutations, her condition will be determined by the extent of the mutation. However, because it is an mRNA problem, Lauryn may be able to take advantage of research into replacing the mRNA, and not be dependent on something like BMT or gene therapy for a cure. This may be possible using her own blood, as is the case with retrodiferrentiation.

Christine Mary:
SO, SHE IS STILL A MAJOR?

Canadian_Family:
When our child was diagnosed with Major, we were in the state of denial for long time but then we accepted the fact. We do not lose hope and remain together for the benefit of child.

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