Living With

Dear Friends:

Keith Stout

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 have phosphorylase deficiency, or McArdle disease.

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 on the Muscular Dystrophy Association website. 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.

Metabolic muscle diseases affect each person differently, but for most of us, it doesn’t limit our lives as much as you may fear.

I’m 50 now and live a very active lifestyle. My life is full and rewarding with my beautiful wife and children. I work full time as a human resources professional, and spend my spare time camping and doing the activities I enjoy.

Those whose metabolic muscle 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. I take care of myself by avoiding injury, eating healthy and visiting the doctor regularly. Meeting other people with McArdle disease, participating in medical research and talking to doctors have helped me take control of my life. Learning more about your disease is just the beginning of your journey.

MDA offers many great services and supports, and 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 website 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, Oklahoma

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