Thalassemia Patients and Friends

Discussion Forums => Miscellaneous Questions => Topic started by: Manal on November 17, 2006, 02:07:22 AM

Title: search for unrelated donor
Post by: Manal on November 17, 2006, 02:07:22 AM

Hi

Does anybody know  sites that accept personal search for unrelated bone marrow donor??

All the sites i found specified that the search should be done through transplant centers

Your help is appriciated

Manal

Title: Re: search for unrelated donor
Post by: Sharmin on November 17, 2006, 03:39:23 AM

Hi Manal,

I have recently been informed that searches need to be done through transplant centres, and they suggest that you have some sort of insurance it is a very expensive process.  I don't know your current situation, but have you ever considered pre-implantation diagnosis with IVF - you can test for thalassemia and match for your child - then using the cord blood for transplant.  Having a sibling match and cord blood gives your child the best chance.  Of course this should only be considered in the context of you wanted to add to your family, and your personal situation - which you know best.   Best of luck Manal. 
By the way - i'm new on this site - nice to meet you!

Sharmin

Title: Re: search for unrelated donor
Post by: Manal on November 17, 2006, 01:17:54 PM

Dear Sharmin

How are you doing? Hope you are fine and welcome to the group. I'm sure you will be enjoying it very much.
I am considering the IVF very much and i know it is done in two places. one in Cyprus and i got the name of the doctor there and i did send him an e-mail to know how much this costs
( approximatly ) ,but unfortunatly there was no answer. Also i knew that the biggest hospital specialized in this (checking thal & matching the HLA type) is found in Chicago ,but i am not able to find any of their contacts because i don't know the name of the hospital. I will keep searching in order to know weather i can afford it or not.  Meanwhile, i am looking for unrelated donor in case i can't afford the IVF.

Manal
 

Title: Re: search for unrelated donor
Post by: Sharmin on November 17, 2006, 10:15:00 PM

I know of a place in the US - I will reply to you once i get the contact information.  best of luck until then. 

Title: Re: search for unrelated donor
Post by: Manal on November 17, 2006, 10:25:42 PM

Thanks a lot Sharmin.

By the way, i received an answer from the doctor in Cyprus and said that they do preimplantation genatic diagnosis (PGD), this means that the baby will not have thal. But they do not do the HLA type as the National Ethics council in Cyprus did not approve it yet.

This means that i have to search for others in the USA

Once again thanks Sharmin

Take care

Manal