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: Feb 17, 2020.

Please donate online to support our work.

Register with us for special access to the web site, download PDFs and be kept in touch by email.

LEAFLETS

We publish a series of leaflets designed to support people with muscle GSDs in different situations – with family and friends, in school and at work. Further leaflets are in development.
Read free on-line, or sign up with us for free PDF downloads.
At home with McArdle’s

1/3rd A4, 6 pages

A plain language guide to McArdle disease aimed at helping family and friends to understand what the affected person has to deal with and how they can support that person. There are sections on the energy issue, the risks, strategies adopted, how they can help and what to do in an emergency.

At school with McArdle’s

1/3rd A4, 6 pages

School can be a difficult time for children with McArdle's. This leaflet will help parents, teachers and other school staff to implement quite simple changes that make all the difference. As well as an explanation of strategies that children will use, there is a large section of ideas on allowances and changes that can be made, notes on the potential risks and what to do if the child overdoes things.

At work with McArdle’s

1/3rd A4, 4 pages

Information for employers of people with McArdle disease, kept as succinct as possible. It has a brief overview of McArdle’s, an explanation of the strategies that workers may adopt, and then a page of ideas on how the employee and employer can make simple adjustments to enable the worker to be effective whilst minimizing the risk of them hurting themselves. Plus of course, the usual notes on what to do should the worker overdo it.