INFORMATION FOR THE
This is the place to start. We are working towards everyone receiving a “new patient” leaflet with their diagnosis, but if you didn't receive one you can read the same details here.
There is much to take in and you probably have many questions. Use the links to help navigate through some of our content here on our web site, especially the publications. You will soon feel more confident about what the future holds.
A diagnosis of McArdle’s usually provides a sense of relief. At last comes recognition of the problems you have had since childhood. Proof of not just being unfit or lazy. With a diagnosis you can learn to manage well. McArdle’s is a very rare metabolic disorder of the muscles, but these days affected people around the world are able to find each other through social media, share experiences, and work together for the benefit of all. The prospects are better than they have ever been.
McArdle’s is one of the best muscle conditions to have. In and of itself it is not progressive or life threatening. You can learn to adapt day-to-day activities. For the vast majority of affected people it is not seriously disabling.
Keep these cards handy to explain the condition or to show if you need some help. It includes a reminder of when to go to hospital, if ever it is necessary. 4 pages, credit card size.
LOOKING AFTER YOURSELF
There is no cure for McArdle’s but there is much that you can do to ensure a good quality of life. Most importantly avoid “bad” activity (static or intense activity such as heavy lifting or sprinting). Take plenty of “good” exercise (gentler exercise such as walking) to improve your aerobic fitness and thus extend what you can do without pain or muscle cramps. You will learn to refine these points.
The “101 Tips” book provides a simple introduction, with lots of ideas to avoid injury, reduce pain and manage your condition. 105x105mm, paperback,164 pages.
There are support groups for GSDs in many countries. They can assist you with information and guidance. People with the condition support each other through shared understanding and experiences. There are internet groups enabling you to share with McArdle’s people around the world. Meeting others with the same condition is very helpful, whether on-line, face-to-face, or on a course.
IamGSD has a wealth of information about McArdle’s here on the web site and in publications, videos, courses and other activities –explore the menus above. You can also learn through conferences, workshops and other events.