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.
These pages have 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 teenager 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.
Now, at 33, I am teaching psychology part time at three colleges and am the proud mother of healthy 5-year-old twins. Although it is difficult living independently, working, and taking care of a home and children, I am living proof it can be done with the help and support of family, friends and MDA. I met my husband, James Smith, through MDA’s Quest magazine. He also has a neuromuscular disease, and together we deal with our challenges and plan our future, just as any other couple does. We have been married now for nine years.
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. For more on MDA's services for individuals and families affected by SMA, see Help Through Services.
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.
Through MDA, you’ll build a network of support. MDA’s Quest Magazine is filled with articles ranging from emergency room protocol, school issues, durable medical equipment and tips on buying a wheelchair-accessible van as well as the latest research news. At your local MDA clinic, expert doctors and health professionals will answer questions and make referrals to other specialists. At your MDA support group, you’ll make friends and find understanding.
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