Discussion Forums > Thalassemia Major

life with thalassemia

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zahra:

--- Quote from: questions on September 17, 2010, 02:32:13 PM ---My husband and I both carry the thalassemia trait and we are planning for our future.  I would like to know anything you are willing to share.  What is it like to care for a sick child or live with thalassemia?  what are the hardships, what are the rewards?  Would you do it all over again?  If it is easier to speak privately I can send a private message.  Thanks!

--- End quote ---
I am wondering why PGD isnt recommended to such parents before a thal child is born like it is afterwards to try to get another non thal child for bone marrow matching???? :huh
Zahra

Andy Battaglia:
There is an article about the current state of BMT in a post at http://www.thalassemiapatientsandfriends.com/index.php/topic,3910.msg39215.html#msg39215  HLA-matched sibling bone marrow transplantation for B-thalassemia major.

There is also a discussion on Facebook between myself and Dr Arthur Bank about this topic.    
Interesting Discussion on Facebook about "France sees first 'saviour sibling'"  http://www.thalassemiapatientsandfriends.com/index.php/topic,3889.msg39040.html#msg39040

The Facebook link is http://www.facebook.com/permalink.php?story_fbid=124764174263936&id=78504283219

Many of the issues about BMT are discussed in these articles and posts.

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