Erin Kiernan, a teenager with Friedreich's Ataxia, monitors her cardiac function closely and gets help from several specialists. Introduction Questions and Answers Does It Run in the Family? MDA's Search for Treatments and Cures MDA Is Here to Help You

INTRODUCTION

Dear Friends:

When I was about 14, I started having problems keeping my balance when standing or walking. After doctors did some tests, I found out I had Friedreich’s ataxia.

My parents and I immediately learned all we could about FA, with MDA’s help. There was no history of the disease in our family so it was a whole new world to us.

	Michelle Moffitt Smith

This pamphlet has been prepared to help you deal with just that situation, by giving you much of the basic knowledge about FA that you’ll need as you or your child learns to live with this disease. You’ll find out that FA affects each person differently, and that, while it presents challenges in daily life, there are many techniques, technological devices and medical treatments to help you meet those challenges.

You’ll read here that FA doesn’t affect the intellect and doesn’t always take away the ability to walk. You’ll also read that some exciting new research in FA may lead to the development of drugs to alleviate symptoms.

As I adjusted to being a teen-ager and a young woman with a disability, I learned a lot — not only about FA but about myself. I became more independent and learned to take charge of my education, my medical care and my other life experiences. Early in my years with FA, a doctor told me something that’s guided me ever since: He said you can’t use having a disability as an excuse for letting others make your decisions or for not pursuing your dreams.

Michelle and James Smith at their wedding

Now, at 25, I’m studying for a master’s degree in psychology and working as an assistant to two professors. When I finish my degree, I’ll either get a teaching job or go on for a doctorate. I met my husband, James Smith, through MDA’s magazine, Quest. He also has a neuromuscular disease, and together we deal with our challenges and plan our future, just as any other couple does.

I know of many productive, successful people with FA — business leaders, outstanding students, engineers, active teens and bright kids, parents, even athletes. We’ve all learned to strike a balance between adapting to our limitations and surroundings, and living a fulfilling life despite them.

Besides my wonderfully supportive family and friends, I get tremendous help from the Muscular Dystrophy Association. MDA offers a great program of services, leads the world in Friedreich’s ataxia research and keeps us well informed about the disease. See "MDA Is Here to Help You" for details of the Association’s program.

While MDA’s research program continues making strides toward better treatments and a cure, it’s good to know that people with disabilities have more opportunities than ever before to develop and use their abilities, and that the laws entitle us to equal employment opportunities and access to public places.

Whatever challenges FA presents in your life, you can be sure that MDA and all its resources are there to help you and your family. You’re not alone.

Michelle Moffitt Smith
Dayton, Ohio

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