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INTRODUCTION
Dear Friends:
If you've just learned that you or a loved one has a metabolic muscle disorder, you're probably both relieved and concerned. That's how I felt when I learned at age 27 that I had muscle phosphorylase deficiency, or McArdle's disease.
Keith Stout |
It was a great relief to have a name and an explanation for a problem I'd had since early childhood. Knowing that my disease is rare and hard to diagnose helped me understand why I'd spent so many years believing I needed to "try harder" but only feeling weaker when I did. It was a relief to know that I wasn't "lazy" and wasn't the only one with this problem.
But getting a diagnosis also raised some questions.
What treatment was there? Would my symptoms get worse? Did the disease affect more than my voluntary muscles? How could I avoid episodes of weakness? Would my children have the same disease?
All those questions are addressed in this brochure from the Muscular Dystrophy Association. MDA offers information and support that will help you move from self-doubt to self-management of your metabolic disorder.
You can, to a great extent, manage your disorder and minimize some of the serious effects. I've learned how to say no to activities that could do harm. I've learned to watch for signs of muscle breakdown so I can avoid kidney failure. I know what treatment I need in case of an emergency, and I carry that information with me.
Metabolic muscle diseases affect each person differently, but for most of us, it doesn't limit our lives as much as you may fear.
In my 30s now, I'm able to work in my chosen field, highway engineering. I don't use a wheelchair or any orthopedic equipment, just a handicapped parking sticker. I have a full and rewarding life with my loving wife and two wonderful children.
Those whose metabolic disease is more disabling will find much support today. Federal laws guarantee your right to a public education, equal employment opportunity and access to public places. Technology makes it possible for many people to perform work that's suited to their levels of ability and health.
Part of maintaining a healthy lifestyle is learning about your metabolic muscle disease. Learning to eat what's best for me and joining a support group on the Internet has helped me stay healthy both physically and mentally. This is just the beginning of your journey to learn more about your disease.
"MDA Is Here to Help" describes the many services MDA offers. The Association's scientists are making great progress in understanding metabolic diseases and finding treatments for them. We all pray for the day when no one has to go through the physical and emotional pain that these diseases can cause.
This brochure will give you the basic facts about your metabolic muscle disease, and MDA will help you answer all your questions as they arise. As you face the challenges ahead, please remember that you're not alone.
Keith Stout
Edmond, Okla.
Facts About Metabolic Diseases of Muscle
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