Living With

Dear Friends:

Mandy Van Benthuysen

When I was 4 years old, my parents took me to a specialist to find out why I walked with an unusual waddle. They learned I had limb-girdle muscular dystrophy.

Like many of you, we were shocked and scared by this diagnosis. My parents wondered why I had this disease; we had no history of it in our family.

But LGMD is caused by any of several rare genetic defects that people may not even know they have. That means it wasn’t caused by anything you or your parents did, and you didn’t catch it from anyone.

My family had to learn a lot about muscular dystrophy and make some major adjustments, both physical and psychological. Our world came to include doctor visits, leg braces, physical therapy and lots of questions. But gradually, muscular dystrophy just became a part of our lives, and we coped with it by learning all we could. Thanks to my determined parents, my devoted sister and the help of the Muscular Dystrophy Association, I had a wonderful childhood.

I graduated from college, and I'm now working in L.A. in the television industry. I use a wheelchair or scooter part time to help me when I work, travel and have fun with my friends.

I hope you can tell from my story that having limb-girdle muscular dystrophy doesn’t mean the end of your choices or your dreams. It isn’t easy to live with muscles that grow weaker over time, but you can have a very rewarding life with this condition.

Not everyone with LGMD has the same experience, but most of those I’ve met have busy, fulfilling lives like mine. I know of a writer, a doctor, an air traffic controller, some teachers, school and college administrators, a real estate professional, a travel agency operator — all with limb-girdle MD. Many of these bright, active, independent people are married, and some have children — and grandchildren.

Those of us with LGMD have a lot of support today. People with disabilities have more opportunities than ever before to develop and use their abilities. Federal law guarantees us a public education, equal employment opportunity and access to public places. Computers and technology help me and other people with muscular dystrophy to move around, write, work and drive.

By far, my greatest ally in living with LGMD is MDA. I’m sure my parents would say the same thing. The Association is also the world leader in research on neuromuscular diseases, and its scientists have made many exciting discoveries about LGMD in the years since my diagnosis. We all pray for the day when no one has to have a neuromuscular disease.

MDA will help you answer all your questions as they arise. As you face the challenges ahead, please remember two important things about having LGMD: First, MDA is making rapid progress toward better treatments and a cure. Second, you’re not alone.

Mandy Van Benthuysen
Los Angeles

Disease: