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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We have a significant booklet of guidance which is in pilot at present - final version expected in the first half of 2018.
Euromac has a booklet of assistance for primary care physicians who have a McArdle patient under their care. 
Read free on-line, or sign up with us for free PDF downloads.
Living with McArdle Disease - in pilot

US Royal size, 50 pages

Currently available as a free PDF in it’s pilot version, this booklet is being expanded by another 10 pages and will be entitled “Improving life with McArdle’s”. The final version is expected to be published in the first half of 2018.

There are sections on all the management techniques such as “second wind”, the “six second rule”, “30 for 80”, etc. There is guidance on such topics as starting an exercise program, tackling stairs, guidance for walking partners, etc., etc., etc.  A truly comprehensive guide to managing McArdle disease.

McArdle Disease medical overview

1/3rd A4, 20 pages

This booklet is from Euromac, an IAMGSD edition is planned.

McArdle disease needs to be managed by a specialist, but this booklet is intended for doctors in primary care and specialists in other areas who are seeing someone who has McArdle’s.  It addresses subjects such as Creatine Kinase (CK) blood tests and what they mean in the context of McArdle’s. There are sections on other lab results, alerts for dangers, and a section on emergencies. All patients should give one to their primary care doctor and hold one themselves to have available on any other medical appointments and if ever attending hospital with rhabdomyolysis.