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Inherited and Endocrine Myopathies

Living With

For more stories of families living with inherited and endocrine myopathies, see our stories on Strongly, the MDA Blog, or see inherited and endocrine myopathies stories on The Mighty.

Dear Friends:

Christine Swanson at the beach with her familyWhen I was in my early teens, I was having an ice cream at the mall with some friends, and suddenly I couldn’t move a muscle. The paramedics and the fire department came, and I had to be wheeled out on a stretcher. The doctors, my parents and friends were baffled by what had happened. Many of the doctors doubted there was anything wrong with me. I had similar attacks over the years. Finally, it was found that I had hyperkalemic periodic paralysis, one of the myopathies described on this website.

If you’ve recently found out you have an inheritable myopathy, you understand what my family and I went through. Because of the rarity of these diseases, your primary physician may not be aware that many of these myopathies can be managed with medication, or changes in diet and exercise. This is why it’s very important that you get all the information you can about your disorder. This website will help you get started.

Learning that you or your child has a rare myopathy can be frightening and confusing. Some people may think you’re lazy or mentally unbalanced, and that can hurt. One thing you can be sure of is that your disorder wasn’t caused by anything you or your parents did, and you didn’t catch it from anyone. As this website explains, each inheritable myopathy is caused by a very uncommon genetic defect that people often don’t even know they have. (Two of the myopathies aren’t inheritable; they’re caused by thyroid imbalances that can occur for no known reason.)

I’ve had to make many adjustments to living with my myopathy. I know what foods and activities can trigger an attack. With a balanced diet keeping my potassium down and my body hydrated, I can exercise and live a full life. I have a supportive husband who’s knowledgeable about my hyperKPP, and we have two healthy children. These victories were possible with the assistance of caring doctors I found through the Muscular Dystrophy Association. MDA also has provided endless support and information.

Like my hyperKPP, many myopathies can be controlled so that they cause very little limitation on your life. But, if you have one of the myopathies that has more disabling effects, you can be sure that MDA is your best ally — helping you to find appropriate therapists, and to locate and repair important assistive devices.

And today, people with disabilities have many opportunities to develop and use their abilities. Federal law guarantees us a public education, equal employment opportunity and access to public places. Computers and other technological advances help us to move around, communicate and work.

This website will give you the basic facts about the inherited and endocrine myopathies, and MDA will help you answer all your questions as they arise. As you face the challenges ahead, please be assured that we’re making rapid progress toward better treatments and cures. And remember, you’re not alone.

Christine (Feigert) Swanson
Portland, Oregon

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