Discussion Forums > Thalassemia Major

Looking for support,and guidance,please.

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Christine Mary:

you guys are the best!!

i had to read your posts 100 times over,b/c they made me feel so much better. thank you.  :hugfriend

ThalGal:
Christine,

You are doing everything you can and you are asking the right questions.  Knowledge is power. 

I recommend that you contact Eva Chin-Li Patient Services, Manager eva.chin@cooleysanemia.org 1-800-522-7222, for the contact information for the CDC funded Thalassemia Centers. 

You will be in contact with a doctor specializing in Thalassemia, you can bring Lauryn for an evaluation and for comprehensive care or put your hematologist in touch with one of these centers to collaborate with.  This is a normal practice for patients who are not treated at one of the centers.

Here is a list of the Centers, choose one that you can travel to if needed.
·   Children's Hospital of Boston
·   Children's Hospital of Los Angeles
·   Children's Hospital Oakland
·   Children's Hospital of Philadelphia
·   Children's Memorial Hospital, Chicago
·   Weill Medical College of Cornell University, New York

There have been many strides made and the quality and quantity of live is much better and will continue to be.


Good luck and stay strong.

Danielle:
Christine, you and Lauryn will be in my thoughts today, as Lauryn goes through her first transfusion.  I hope that everything goes as well as possible and that they get her IV in one shot.  You both and your family are in my prayers, sweetheart.   :hugfriend

Zaini:
Hi Christine,

i hope everything is fine at ur end,,all of my prayers are with u,keep us updated please.

love to lauryn.

Zaini.

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