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Glycogen Storage Disease stories


HÜSEYIN EMIR'IN HIKAYESI


Merhaba, Oğlumuz doğduktan 2 hafta sonra karaciğerinin büyük olduğunu öğrendik.Böylelikle testler yapılmaya başlandı.Metabolik bir hastalığı olabileceğini söyledi doktorlar.3 aylık olunca karaciğer biyopsisi ol...

Views: 910 Feb 3, 2016, 9:19 AM by Hüseyin Emir

GSD XI


Neylan was growing well until 12 months of age and she dropped off her growth curve. In addition she started having developmental delays. We were sent to numerous specialists and only diagnosis they could come up with was renal tubular acidosis. But ...

Views: 713 Dec 20, 2015, 9:46 AM by Neylan Rhyne

MYERS FAMILY


My name is Valerie. My first child was diagnosed with 1a February 1994. She died of complications March 2006. In addition, I have two other children with 1a. My son, Austin, is 17 and my daughter, Arielle, that is 9. We have lived with GSD for 21 yea...

Views: 648 Dec 20, 2015, 7:31 AM by Myers family

LINDA'S STORY


Views: 564 Apr 13, 2016, 11:10 AM by Linda

KAITLYN'S STORY


I also hve 4 brother with GSD type 6

Views: 464 May 27, 2016, 2:30 PM by Kaitlyn

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Glycogen Storage Disease forum


FANCONI BICKEL SYNDROME


I need to share information about Fanconi Bickel syndrome with others

Views: 538 Jan 12, 2016, 6:01 AM by Father of Farah

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