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.

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The first book for anyone newly diagnosed with McArdle’s is the “101 Tips”. Then there is one of all the medical and scientific research, and a story of a McArdle journey in more ways than one. 
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101 Tips for a good life with
McArdle Disease

110mm square, 164 pages, paperback

This book is from Euromac.

Living with McArdle Disease is challenging in many ways. Running out of energy, cramping and muscle pain are everyday experiences. Even simple tasks like chewing or drying after a shower can be a challenge. This book passes on practical tips which McArdle people have found to be useful. It provides explanations of key subjects – "second wind", the “six second rule”, “30 for 80”, the immediate energy “reservoir” and guidance on emergencies. This book will help McArdle people to reduce intense (anaerobic) activity and extend more gentle (aerobic) activity. These changes can improve day-to-day life. The aim is to avoid pain and muscle cramps, reduce or eliminate hospital visits and get more out of life.

The McArdle Disease Handbook

US Royal size, 208 pages, paperback

This handbook is from AGSD-UK.

The handbook puts into plain English the published information about McArdle Disease which is normally written in technical language as it is aimed at medical or scientific professionals.


Some sections are still rather technical, but in general the handbook should be understandable to those without any medical or scientific training. It is fully referenced to the source publications. Each chapter has an introduction which summarizes the coming pages as simply as possible. Then more detail is given in the chapter text, using slightly more technical language.


US Royal size, 128 pages, paperback

‘One Step at a Time’ traces the route, thoughts and emotions of a McArdle patient on a life-altering journey of discovery and growth. Her understanding irrevocably evolves when she walks over two hundred miles to meet it.

‘One Step at a Time’ provides a truly awakening narrative for patients, families and health professionals alike.

By Stacey L. Reason, with a foreword by Dr. Ros Quinlivan and an afterword by Dr. Mark Tarnopolsky.