Our leaflets, books, booklets and cards are in English, some in a few other languages, with more to come. These are initially for McArdle’s, other conditions to follow.
Explore this list of publications to see what is offered.
Flip through publications online, and download PDFs, free of charge.
You will soon be able to order printed copies from our shop.
We publish a series of leaflets designed to support people with muscle GSDs in different situations – with family and friends, in school and at work.
AT HOME WITH MCARDLE’s
1/3rd A4, 6 pages
A plain language guide to McArdle disease aimed at helping family and friends to understand what the affected person has to deal with and how they can support that person.
It has a one page quick overview. Then there are sections on the energy issue, the risks, strategies adopted, how friends can help and what to do in an emergency.
AT WORK WITH MCARDLE’s
1/3rd A4, 4 pages
Information for employers of people with McArdle disease, kept as succinct as possible. This leaflet has a brief overview of McArdle’s, and an explanation of the strategies that workers may adopt.
Then there is a page of ideas on how the employee and employer can make simple adjustments to enable the worker to be effective, whilst minimizing the risk of them hurting themselves. Plus of course, the usual notes on what to do should the worker overdo it.
AT SCHOOL WITH MCARDLE’s
1/3rd A4, 6 pages
School can be a difficult time for children with McArdle's. This leaflet will help parents, teachers and other school staff to implement quite simple changes that make all the difference.
As well as an explanation of strategies that children will use, there is a large section of ideas on allowances and changes that can be made, notes on the potential risks and what to do if the child overdoes things.
BOOKS AND BOOKLETS
We have a pocket sized book of tips, a booklet of extensive guidance, the major reference source for McArdle’s, a medical overview booklet of assistance for primary care physicians and the book of Walk over Wales.
101 TIPS FOR A GOOD LIFE WITH MCARDLE DISEASE
110mm square, 164 pages, paperback
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.
MCARDLE DISEASE MEDICAL OVERVIEW
1/3rd A4, 20 pages
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.
LIVING WITH MCARDLE DISEASE
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 2020.
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.
THE MCARDLE DISEASE HANDBOOK
US Royal size, 208 pages
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.
ONE STEP AT A TIME
US Royal size, 128 pages
‘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.
These information and emergency cards should be carried at all times, as an episode of rhabdomyolysis can happen very unexpectedly.
MCARDLE DISEASE CARDS
Credit card size, 4 pages
This is a folding card small enough to fit in a wallet/purse. Keep some in the car and in your desk at work. It is a quick way to explain the effect of the disease to people you meet. There are also some pointers on the type of assistance that you might need.
The inside has guidance on what to do in an episode of rhabdomyolysis. Most importantly, it has a brief note for emergency doctors. There is a space for you to write in a name and/or phone number of a doctor who should be contacted.
“I have had two recent emergency visits to hospital. The ER staff thanked me for bringing the card with me and said it was very helpful.”
Harriet McGinnis, USA