What is IamGSD?

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

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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

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If you have another muscle GSD please contact us.

PRIMARY CARE

As ultra rare conditions, muscle GSDs must be managed by a specialist. However, issues can arise in primary care, so general practitioners need to be well briefed. This booklet addresses that need in McArdle Disease.
ARE YOU, FOR EXAMPLE?

  • Concerned about high baseline levels of Creatine Kinase (CK or CPK) ?

  • Needing to know the inheritance pattern, to counsel a patient?

  • Not clear what constitutes an emergency in McArdle disease?

  • Want information on what is safe for physiotherapy?

  • Unsure of the risks of medications, general anaesthetic and tourniquets?

  • Uncertain about how McArdle disease may affect overall health.

 

All the answers, and a lot more information, are in this 20 page briefing on McArdle disease.  

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Check the contents, then use the controls below to go to the page you want. Or just flip through the pages.

OTHER LANGUAGES

Originated by AGSD-UK, this booklet has been taken on by Euromac and produced in English, French, German, Greek, Italian, Spanish, Catalan and Turkish. You can download PDFs of these languages.