13 Responses to “Welcome GSD Life”

1. 

   Jose Cabrera
   

   16. Mar, 2009

   Hi we live in NY, we have a daughter who is now 9 months, she was diagnosed at the age of 5 months of GSD type 1, which is why she was admitted to the Intensive Care Unit for one month (NUY PICU of Hospital) . Dr. Weinstein us Recommend this page where we could provide some sort of support or information about this disease. We are anxious to receive any help since this has been very hard for us as parents. In advance thank your host

   Anita and Jose Cabrera

   Our daughter is named Camila
2. 

   mabel vogt
   

   21. Apr, 2009

   I ve got two grandchild with glycogen storage disease.One is twenty months and six weeks old, they are fron the same family. I want to learn as much as possible on this disease. Mabel
3. 

   ybbdnn1
   

   14. Jun, 2009

   Want to join the community, share exchange, for more information
4. 

   Betsy Potocik, RN
   

   02. Jul, 2009

   I’m proud to be a part of the University of Florida Glycogen Storage Disease Program on the Clinical Research Center.
5. 

   Julie Stream
   

   29. Apr, 2010

   I have a 5 year old son who has a large stomach and is very short for his age. We have tried for years to find out what is the matter with him, but have not found the answer. Can any one help? Thank you Julie
6. 

   Krissy LeBeau
   

   10. Sep, 2010

   We have a 11 month old son who has recently been diagnosed with GSD. We would love any tips or info regarding recipes for GSDIII and Gtube care and tips. Thanks a bunch! Krissy For Julies question above the enlarged stomach was the first sign of GSD which was due to an enlarged liver. This was confirmed by a ultrasound and xray.
7. 

   Ben Whitaker
   

   13. Sep, 2010

   Krissy,

   Please register in the community. You will find a lot of information and be able to ask specific questions that can help you out.

   http://gsdlife.ning.com/main/authorization/signUp?

   Thanks,
   Ben
8. 

   Name (required)
   

   19. Nov, 2010

   I have a son 12 years old has gsd 1a , he is eating a cornstarch and on diet since he born but he has big tommy from the live is r enlarge and very short for his age he looks like 8 years old , he always asking why ? so i don’t know how to help him . i need help plssssss
9. 

   Ben Whitaker
   

   22. Nov, 2010

   Please sign up in the community. You will be able to ask specific questions that will help you. You can also browse the current posts from other members that will also be very helpful.

   Click here to become a member of the community: http://gsdlife.ning.com/main/authorization/signUp?

   Let me know if you need a hand.

   -Ben
10. 

    Sally Almond
    

    19. Mar, 2011

    I am 13, 14 in Aug. I have GSD type 1a. I am in the Hospital right now, I have been vomiting off and on for a week, the nausea just wont quit, even with gravol and numerous other anti nausea meds they have given me. does anyone have any advice. Also I would really like to know if there are any other girls my age or just any other girls anywhere like me. Hope to here from someone soon. S.A.
11. 

    Danielle Stem
    

    23. Mar, 2011

    Ben and Jill
    I just wanted to tell you how much you inspire me to not give up when I feel like it..
    I know there are so many families like yours that can benefit from Genesis..
    For you and our little buddies, we will continue our work to make lives better.. One dog at a time…

    Thank you for your continued support.. and friendship…
    Luvs
    Danielle
12. 

    Tabitha
    

    04. Sep, 2011

    Sally Almond. I am affected with 1a also. I turned 14 in Aug.
    Hope you are doing better. I would be more than happy to talk with you. There is almost nobody around our age with GSD 1a.
13. 

    BELLA
    

    22. Sep, 2011

    Hello. And happy belated birthday. i would love to talk to you and learn about you and your life, so i can know what to expect for my babygirl. She is only 3 months old and i am learning about this condition step by step. I hope you doing well.