Thalassemia Patients and Friends

Discussion Forums => Thalassemia Intermedia => Topic started by: CLS on September 01, 2009, 05:52:18 AM

Title: PGD For HbH
Post by: CLS on September 01, 2009, 05:52:18 AM

My daughter was diagnosed for HbH when she was a baby, fortunately she is doing fine and we are planning to have another child. 

We live in the States and decide to do IVF and PGD to find the embryos without HbH for transfer.  Do you know of any lab which has this kind of technique?   My husband is a 2 deletions alpha thal minor and I am a 1 deletion alpha thal silent carrier.  The lab is able to visualize his mutation but was unable to visualize mine.  We need to find another lab which can visualize both of our mutations.  Please help.


CLS

Title: Re: PGD For HbH
Post by: Andy Battaglia on September 01, 2009, 06:21:50 AM

Hi CLS,

Contact Eileen Scott at CAF. She should be able to direct you.


Cooley's Anemia Foundation
330 Seventh Avenue, #900
New York, NY 10001
(800)522-7222
Fax: 212-279-5999

Patient Services Manager
Eileen Scott
eileen.s@cooleysanemia.org

Title: Re: PGD For HbH
Post by: Sharmin on September 01, 2009, 02:28:03 PM

Dr. Mark Hughes in Detroit is the best doctor to consult for PGD/IVF.
You can have the IVF where you are currently located, the samples can be sent to Dr. Hughes lab - where they will be analyzed.

Best of luck,

Sharmin

Title: Re: PGD For HbH
Post by: opkaram on September 06, 2009, 07:21:14 PM

You can try following

Reproductive Genetic Institute
2825 North Halsted,
Chicago, Illinois 60657

They have multiple location some of them are in UK, Turky etc. But they do not have any affiliation in India.

or Sharmin Mentioned -

Genesis Genetics Institute, LLC
5555 Conner Avenue, Suite 1100
Detroit, MI 48213
Tel: 313-579-9650
Fax: 313-544-4006

We had also undergone IVF and PGD cycle but it was unfortunately not successful. Mark Huge is a great person and they work with any IVF center ( Only in US). If you need any more information, pls let me know.

Regards,
Om

Title: Re: PGD For HbH
Post by: CLS on September 07, 2009, 04:08:35 AM

We are using Genesis Genetics and they said they can only visualize my husband's mutation in his DNA sample and in my daughter's DNA sample.   They are unable to visualize my mutation in my DNA sample and in my daughter's sample.  I do not really understand why.  I am a silent carrier of Alpha Thal with 1 deletion.   

Title: Re: PGD For HbH
Post by: Manal on September 15, 2009, 05:39:04 AM

I used to be in contact with Reproductive Genetic Institute (RGI) and they were very helpful and were recommendedby doctor Anver Kuliev, professor of Genetic disorders. RGI have also dealt with many cases of thal to the extent that they offer a discount for thal cases :rotfl :rotfl

manal

Title: Re: PGD For HbH
Post by: CLS on September 16, 2009, 05:36:54 AM

Have contacted RGI and waiting for they reply.  Hope they can help us out.  Thanks.