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McArdle Disease medical overview

Please note that this translation is automated and may not be perfect.

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Page 19

SUPPORT

Cards and publications


These publications are available for free on-line browsing and download of free PDFs via our website.

https://www.iamgsd.org/publications


Information/Emergency cards

Patients should carry one of these credit card-sized folding cards in case of an unexpected serious episode. Available from support groups and McArdle’s consultants.

  • Short description of the condition.

  • When patients may need assistance.

  • Reminder of the circumstances in which to go to the hospital.

  • Link to emergency treatment suggestions, for the hospital doctor.


101 Tips for a good life with McArdle Disease

Andrew Wakelin

164 page pocket-sized paperback with practical tips which McArdle people have found to be useful. Plus simple explanations of key subjects – second-wind, six second rule, energy reservoir, 30 for 80, etc plus guidance on emergencies. This book will help McArdle people to avoid pain and cramps, reduce hospital visits and get more out of life. Other language versions are also available.


The McArdle Disease Handbook

Kathryn Elizabeth Birch, PhD

Fully referenced to over 260 original research papers. 208 page paperback. A guide to the scientific and medical research. Covers the cause, inheritance, history, symptoms, emotional aspects, treatments, and all the issues which can face McArdle people. Also in German and Italian, printed and PDF, via their GSD support groups.


Leaflets for various situations

A range of leaflets for: attending hospital in an emergency, explaining McArdle’s to friends, information for schools and for employers, guidance for physical therapists/personal trainers, etc.

McArdle Disease Medical Overview

IamGSD

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