Thalassemia Patients and Friends

Discussion Forums => Thalassemia Major => Topic started by: Mukta on October 02, 2015, 01:28:45 PM

Title: Son Rudra : HLA reports and search results on bethematch
Post by: Mukta on October 02, 2015, 01:28:45 PM

Friends ,

I just received my son's HLA reports few days back and my wife and me turnout to be only a 5/10 match for him. So our being a donor is ruled out unless we opt for Haploidentical approach of the mother being the donor.
I read on one of the forums about Andy sharing the bethematch link where I could lookup myself to see for any donors. The search results from bethematch are as below.
Since I have very little knowledge on this I am not sure how do I interpret these results and if these results show any positive signs for finding a donor. Can anyone please help me understand these results. I have approached my doc with the HLA reports but they have been very slow in responding  since last few days.

bethematch reults.

Results for the HLA type you entered:
A: 02:01:01G,11:01:01G B: 18:01:01G,39:06:02 C:07:02:01G,12:03:01G DRB1: 07:01:01,16:01:01

Be The Match Registry® Potential Adult Donors:
•   Potential matches at 8 of 8 HLA markers: 5
•   Potential matches at 7 of 8 HLA markers: 270
•   Potential matches at 6 of 8 HLA markers: 138

Be The Match Registry® Potential Cord Blood Units:
•   Potential matches at 6 of 6 HLA markers: 0
•   Potential matches at 5 of 6 HLA markers: 19
•   Potential matches at 4 of 6 HLA markers: 746

Title: Re: Son Rudra : HLA reports and search results on bethematch
Post by: Andy Battaglia on October 03, 2015, 02:16:52 PM

BMT carries risk for every patient, but without a good match, it should not even be considered. In my opinion, haploidentical BMT should not even be tried, except under Dr Sodani. Your best chance is to find an unrelated donor.

Title: Re: Son Rudra : HLA reports and search results on bethematch
Post by: Lokkhi maa on October 04, 2015, 09:42:45 AM

Last week my gaini doctor call me for asking about me and my babies health and advice for BMT.But I have very bad experience so still I am not interested for BMT.Last year Dec 2014 one of my office colleague sisters 9 years old daughter was completed her BMT by Dr Sodani team and come back to Bangladesh.Her donor was her elder brother.I have seen that time some images where she lost her hair and in hospital bed.After 15 days of come back they marked that the child loose her weight and no interest to taking any food.As they have many instruction about diet.Her hb found then 9.00.So they again go for check up but I was really shocked and felt sorry for the family when I got the news that the child dead after 2 months of BMT.