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GSD

2/16/2017

5 Comments

 
   GSD...what is it? Glycogen Storage Disease is a rare birth defect in which your liver is missing a gene. This disease is near and dear to my heart, my grandson Zachary was born with this missing gene. 1 in 100,000 children worldwide (1 in 20,000 in Mexico) will be born with this debilitating disease. It is caused by both parents of an individual with an auto-somal recessive condition each carry one copy of the mutated gene, but they typically do not show signs and symptoms of the condition until your child shows signs of "not growing", usually by the 5-6 month check-up. What occurs is the liver stores any sugar that the body does not use which in turn will enlarge the liver and cause problems to other organs.
   The "medicine" for this disease to keep the child alive is.... are you ready... "cornstarch"! It is mixed with water & ingested or given though a G-tube every 2-3 hours. The reason cornstarch is so effective is that it is a very thick liquid  (typically used as a gravy thickener) and it takes 2-3 hours for the body to digest it (it breaks down at the same rate as the body uses it). This dose repeated every 2 to 3 hours, 24/7, 365 in order to keep their glucose level stable, This life-saving natural starch is the lifeline for a GSD patient.
   There is hope on the horizon! This disease has been cured in Maltese dogs! (GSD type Ia occurs naturally in this breed). Without treatment, all of the dogs die within hours of birth. Even with medical therapy, no dog with the disease had survived for more than 4 weeks when this work started and now they are all alive and doing well.
   We are very excited to be starting human trials soon to cure this dreadful disease.
Sadly, this rare disease has no Government funding to find a cure because the numbers are so low. We, the families & friends create fund-raising events to bring awareness to GSD.

Thank you from all GSD people looking forward to a more normal life!
​ 
5 Comments
Aunt Dee
2/17/2017 01:37:20 pm

As mentioned above, it is done every few hours 24/7, 365.
What does that mean to family and friends of Zachary as he grows.
Never a full night sleep for parent or child. Special diet. Planning a day trip, don't forget the blood testing kit, or the specially cooked food, corn starch and injectors. Having a sleep over with friends, No. Going on class trips, need a parent or nurse or No.
Just playing at the park can be very limited. You see what I am getting at, these parents, grand parents are amazing. They may complain that the trash didn't go out, but you never hear a negative word of going through this, this child and all others are the light of their families lives. Amazing family. Hope yours is too!

Reply
Martin Glykogenose
2/18/2017 04:33:51 am

Congrats to your very interesting and great blog. You bring the disease a bit more into the public and that is very important for all of us "glycko´s". Many thanks for it and please always publish something

Reply
Aunt Dee
2/18/2017 09:03:11 am

Reply
Alberto Zaragoza link
2/18/2017 10:37:00 am

The future is bright., This year the first tests of gene therapy begin., Help us to change the history of thousands of children in the world who like Zachary have GSD., Your help will be invaluable !! thanks for your generosity

Reply
Tara
4/25/2017 12:13:42 pm

Thanks for writing about this dad. Hopefully this will make it around to bring more awareness. CURE GSD!!

Reply



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