A wealth of information and guidance is available online and in printed form, plus there is support from the McArdle’s Coordinator and opportunities to meet others affected by McArdle’s.
A range of publications to address different needs
Publications on McArdle’s
Printed copies of these publications may be purchased by clicking through to our on-line shop. We accept orders for printed copies for despatch all over the world, with payment by credit or debit card. Many of our publications are also available for free on-line searching and browsing via Google Books.
Note: Publications are provided free of charge to people in the UK diagnosed with McArdle’s. Please contact the McArdle’s Coordinator if you are diagnosed and have not received your copies. Additional copies may be purchased.
101 Tips for a good life with McArdle Disease
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’, ‘30 for 80’, ATP ‘reservoir’ and guidance on emergencies. This book will help McArdle people to avoid pain and cramps, reduce hospital visits and get more out of life.
Living with McArdle disease
52 page booklet with a great deal of in-depth guidance on protecting yourself, starting an exercise programme and impoving your techniques. This book is currently in pilot and will be expanded for its final edition.
McArdle Disease: Medical Overview
20 page, DL sized booklet. Based on the experiences of people with McArdle’s and the issues that arise in primary care and hospital visits. It offers referenced information and addresses all the common misconceptions, confusions and mistakes. Each patient should have at least two copies so that they may give one to their GP and retain one.
Information and emergency cards
A credit card size, four page card. Patients should carry one of these information and emergency cards in case of needing assistance or having an unexpected serious episode.
These cards provide:
- A short description of the condition.
- Notes of when and what assistance may be required.
- A reminder of the circumstances in which a patient needs to seek urgent medical attention.
IamGSD information leaflets
IamGSD produces a series of 1/3rd A4 sized information leaflets of 4 to 6 pages to help explain McArdle’s to friends and family, to schools and to employers. For schools and employers the leaflets explain what adjustments or accommodations may be required. Copies are available through the AGSD-UK McArdle’s Coordinator.
One Step at a Time – Walking with McArdle Disease
Stacey L Reason
‘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. From the Welsh countryside to practical advice for day-to-day living, The story of ’Walk over Wales’, ‘One Step at a Time’ provides a truly awakening narrative for patients, families and health professionals alike.
Today, walking with others has become a regular event. McArdle groups are getting together around the world to walk, share and learn from one another in a supportive and safe environment.
The McArdle Disease Handbook
Kathryn Elizabeth Birch, PhD
Ideal for patients and doctors wanting more in-depth information. Fully referenced to over 260 original research papers. 208 pages, large paperback. A guide to the scientific and medical research into McArdle Disease. Covers the cause, inheritance, history, symptoms, emotional aspects, treatments, and all the issues which can face McArdle people.
Also available in German and Italian from their respective national support groups.