PUBLICATIONS
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.
In future you will be able to order printed copies from our shop.
Flip through publications online, and download PDFs, free of charge.
Originated the “Living with McArdle Disease” booklet, the series of leaflets and is gradually producing all publications in IamGSD editions.
Originators of the Handbook, 101 Tips, Medical Overview, the emergency cards and much of the information on McArdle’s.
Translated and produced versions of 101 Tips, Medical Overview and the emergency cards in up to seven additional languages each.
LEAFLETS
We publish a series of leaflets designed to support people with muscle GSDs in different situations – for example, with family and friends, in school, at work, at the gym, traveling and on emergency hospital visits. Use the menu at right to go to the leaflet you want.
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 PEACE WITH MCARDLE’S
1/3rd A4, 8 pages
The typical long delay in diagnosis can in some people result in psychological issues relating to embarrassment and isolation, leading to poor self image, anxiety and depression. This leaflet provides many tips which others have previously found to help them to develop a positive outlook for living with this disorder. Share with family and friends for them to understand.
The page order of this 8-page leaflet is best followed online.
There is more support of this nature on the pages: “Tips for a positive future”, “Psychological aspects” and “Positive thoughts”.
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.
AT HOSPITAL WITH MCARDLE’S
1/3rd A4, 6 pages
Information for emergency visits.
Notes for both people with McArdle’s and medical staff on how to assess and manage serious episodes requiring emergency hospital attention.
Includes a very brief introduction to McArdle’s, guidance on when to seek medical attention and information on assessment, management and considerations for discharge.
AT THE GYM WITH MCARDLE’S
1/3rd A4, 6 pages
Billed as a “Briefing for physical therapists”, this leaflet gives a short introduction to McArdle disease and explains why affected people need to keep physically active. It explains how the physical therapist or or other professional can help, and gives guidance on how to approach both aerobic and strength training.
This leaflet is part of our Training Support package to be found on the Medical menu.
TRAVELING WITH MCARDLE’S
1/3rd A4, 6 pages
Lots of ideas on how to plan safe travel. Most people with McArdle’s can travel without much difficulty, but there are things which can catch out any of us. In this leaflet we provide ideas on planning for a safe trip. We also have lots of tips on things to avoid, things to request and things to do.
Whilst air travel probably has the most challenges, our suggestions also apply in many ways to travel by train and bus.
BOOKS AND BOOKLETS
We have books and booklets for people with McArdle’s, a medical overview for primary care physicians, major reference works for specialists and the book of “Walk over Wales”. Use the menu to go to the book you want.
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.
CLINICAL PRACTICE GUIDELINES
A4, 40 pages
This is a vitally important paper for medical professionals and will be of interest to many patients. The paper was published in Neuromuscular Disorders, the Journal of the World Muscle Society, and is available through Open Access.
IamGSD has published this booklet combining the paper and its supplementary material with a comprehensive contents list. We offer A4 and US Legal page sizes. Download below or read more about it here.
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 / CPK) 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.
LIVING WITH MCARDLE DISEASE
US Royal size, 50 pages
Out of print, but currently available free online or as a PDF download. Much of this information is also being transferred directly to the website.
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, medical emergencies and how to manage them, guidance for walking partners, etc., etc., etc. A truly comprehensive guide to managing life with 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.
Although now out of print the book remains available on-line.
EMERGENCY CARDS
This information and emergency card should be carried at all times, as an episode of rhabdomyolysis can happen very unexpectedly.
“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
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.
View on line or download the most suitable PDF.