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Author Topic: about my daughter (blood disorder)  (Read 4182 times)
azeemjaved
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« on: April 24, 2016, 11:48:26 AM »

Hi,
    Ayesha is a 3.5 year girl living in Pakistan has blood disorder. She is diagnosed for “Pure red cell aplasia” and ultimate cure is Bone marrow Transplant. She has no side effects with iron chelation and blood transfusion and living happily.

 We have tried searching donors in family/cosines and even her sibling but they are all not matched.

I have talked to Dr, Shishir Seth from Apollo Cancer Institute and Dr Sunit Bhat from Mazumdar Shaw Cancer Centre, Narayana Health City Bangalore, India. They have tried searching unrelated donor in Donor register and but no success.

They found 9/10 matched donor but I am afraid they said there is risk of death when donor is not %100 matched. They also tell me about Haplo-identical BMT from mother with no %100 success rate.


Ayesha is going to Turkey/Istanbul in 2 months and we will try searching donors there. i have talked to Acibadem hospital in istanbul and they tell us following price.

$50,000 for unrelated donor
$150,000 for Transplant


She is taking followings Medications:

Red pack cell Transfusion every month

2 x 100mg Asunra Tab. Per day
1 x 500mg deferral injection 3 times a week


I would like to know what other options are there?
Is there any new research where we can produce an HLA matched baby?
« Last Edit: April 24, 2016, 11:54:44 AM by azeemjaved » Logged
azeemjaved
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« Reply #1 on: April 24, 2016, 12:04:31 PM »

Ayesha's High resolution HLA Report

https://i.imgsafe.org/57337a6.png
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Andy Battaglia
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« Reply #2 on: April 24, 2016, 01:10:42 PM »

The 9/10 match would be much preferred over the experimental haploidentical transplant.
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Andy

All we are saying is give thals a chance.
azeemjaved
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« Reply #3 on: April 24, 2016, 03:26:49 PM »

The 9/10 match would be much preferred over the experimental haploidentical transplant.

did you see the cases where BMT done with 9/10  matching and later patient face problems?

and

did you see the cases where BMT done with %100 matching and later patient face problems?
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Alamalpha
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« Reply #4 on: January 17, 2017, 09:34:11 AM »

I think I am also in same boat.
Thallasemia major , 2 years old.
Match 11/12 with mother.
Italy says go for it.
Pak says go for it.
Samsung korea say will check and then go
India says let's get unrelated, if not then go for it.
Now I don't know really where to go.
Analysis paralysis
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Alamalpha
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« Reply #5 on: January 18, 2017, 12:43:50 AM »

Azeem javed , I just acibadem had informed me to go with 11/12 from mother and saidthen no  Need to search from registry. But cross check as the cost estimate are high. At this cost I believe you can travel to italy even
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Andy Battaglia
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« Reply #6 on: January 21, 2017, 03:34:12 PM »

I'd be much more comfortable having it done in Italy.
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Andy

All we are saying is give thals a chance.
Alamalpha
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« Reply #7 on: January 28, 2017, 01:48:23 PM »

Now in a confusion.
They found 12/12 in uk
Also found 10/10 in germany.
Confused....
12/12 unrelated in india or 11/12 in italy???
In Italy They say  No difference
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Himanshu Kumar
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Aditi


« Reply #8 on: February 07, 2017, 07:26:22 AM »

For 100 pc match you may go anywhere. For less than perfect match go with the most experienced hospital. One that has handled highest number of cases with 9/10 or 11/12.
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Regular transfusion, Keeping pre transfusion HB above 10 and Iron Chelation are the three mantras for thals to stay healthy.
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