What is IamGSD?

We are a patient-led international group encouraging efforts by research and medical professionals, national support groups and individual patients worldwide.

What is Muscle GSD?

Human bodies make glucose from carbohydrates. Excess glucose is stored as glycogen in our muscles and liver. Muscle glycogen storage disease is when our muscles cannot convert their glycogen back into glucose to power our muscles.

Muscle GSDs links
If you have another muscle GSD please contact us.

Site updated: March 2020.

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CAMPAIGN 1

REDUCING THE AGE OF DIAGNOSIS

THE ISSUE
In McArdle disease, symptoms are frequently apparent before the age of 5 and certainly by age 10. Despite being taken to the family doctor at a young age, diagnosis is often delayed on average 20 to 25 years. The same applies to most of the other muscle GSDs.
Because undiagnosed people are unable to understand how to manage their condition, many will damage themselves. Most will also have significant psychological issues relating to self image, anxiety and depression.
OUR GOAL

To have every child diagnosed before the age of 10. 

 

OUR OBJECTIVES

We will work towards our goal by:

  1. Raising awareness amongst Physical Education teachers.

  2. Helping to educate General Practitioners about muscle GSD.

  3. Making more child/parent centered diagnostic information available.

  4. Helping to educate pediatricians about muscle GSD.