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Thalassemia Patients and Friends and thalpal Ā© A. Battaglia 2019





55095 Posts in 5864 Topics by 6145 Members
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A message for all  parents who are thals. Keeping your iron load under control is an absolute obligation to your children.
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Author Topic: bone marrow transplant with matched unrelated donor  (Read 14598 times)
runa2005
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« on: January 12, 2015, 11:23:21 PM »

Dear Andy,
my son is 10 yrs old and is E-Beta thal and is undergoing regular transfusions. I have been searching for a permanent cure and have got a 10/10 match from a foreign registry thru a hospital. I checked my match and got only 50% with my son and since he has no siblings so no chance of a proper match .I stay in mumbai and have done his MRI  T2 -heart is clear and mild deposit in liver. Doc has given green signal from his side saying my son has 90% success rateand 5% rejection and 5% mortality.I have heard that in India the TRANSPLANT itself is not so developed like west and MATCHED UNRELATED TRANSPLANT R VERY LESS DONE SO IN INFANT STAGE.PLZ HELP ME AS TO WHAT I SHOULD I DO- ?Doctors r giving me contradictory answers -some telling me to do bmt and others saying that do transfusion and chelation and no need to take risk.I  want him to be cured but cannot think of bmt due to LIFE RISK ACTING AS A BARRIER BIN MY MIND.I KNOW U WILL TRY UR BEST TO HELP ME OUT OF THIS SITUATION.
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Himanshu Kumar
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Aditi


« Reply #1 on: January 18, 2015, 04:36:14 AM »

Hello Runa,

BMT is always associated with risk. As you have mentioned in your post, BMT with with 10/10 match has 90% success rate. It is a tough decision to make whether to go for it or not. These days life expectancy of thals are far higher than before and with regular transfusion/chelation thals can lead a very healthy and near normal life.

The decision to go for BMT or not has to be solely made by you and your partner and no one else.

There are many hospital which do BMT with full match and as per my knowledge many hospitals in India specialise in 10/10 match BMT. To name a few - Apollo Chennai, Narayana Hrudalaya, Bangalore, BLK Delhi, Jaslok Mumbai, Tata Memorial, Sir Ganga Ram etc..

If funds are not a constraint then you may consider Italy, US , Singapore etc. you can find the list of the BMT centers across the world in the link below. Trust this helps...

http://www.curethalassemia.org/bone-marrow-transplantation-bmt/transplant-centers/

All the best,
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Regular transfusion, Keeping pre transfusion HB above 10 and Iron Chelation are the three mantras for thals to stay healthy.
Canadian_Family
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« Reply #2 on: January 19, 2015, 12:30:33 PM »

If I would be in this situation, I would postpone BMT for another 2 years to see how stem cell transplant (less risky) trails are coming out.

Reading thorugh your post, it looks like you may be jumping the gun, have you contacted the potential donor, where is he/she located. Is the person willing to travel or donate bone marrow. Is there any monetory reward involved (not sure) everybody is different.

If I am going for BMT, I would first check out these things.
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Regards.
JV
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« Reply #3 on: January 19, 2015, 03:20:56 PM »

I agree with Canadian Family 100 percent. There is no sense taking that risk now when thals are living normal lives as well as stem cell being so close...
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runa2005
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« Reply #4 on: January 22, 2015, 08:06:55 AM »

Dear friends,
             thank u for replying to my query. Actually we r in touch with a hospital who have found out a german donor  whose HLA HIGH RESOLUTION has got matched fully with my son.So the doctor in the hospital will be arranging everything with the donor thru registry.The donor has been contacted and informed about our match and is on hold.We would have to pay to the german registry few lacs and the peripheral stem cell from the donor would be bought by a person from the registry here .This is the procedure told by the doctor to us
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Alamalpha
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« Reply #5 on: January 18, 2017, 12:53:00 AM »

Runa , dear arereader you done with BMT?
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Pratik
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« Reply #6 on: September 21, 2017, 12:06:02 PM »

Hi Runa,

Yes I'd love that. I'd pay the fees. Just let me know how to order.
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Every child is special.
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