I've lived with CMT since my early 20s — more than half my life. The disease has progressed slowly over the years, mostly affecting my lower legs and hands, so that now I use a manual wheelchair part time. In those years, I’ve continued a career in consumer services, hosted a local cable show educating the public about disabilities, and pursued my interests in videography and photography. I’ve also recently married, and I continue to contribute my knowledge and experience to others with disabilities.
These disease pages have been prepared to give you the basic knowledge about CMT that you’ll need in order to help you prepare for changes that may occur in your future. CMT is usually quite slow in progression, and while it presents challenges in daily life, there are many techniques and devices to help you adapt to those challenges.
You’ll read that many different genetic causes of CMT have been found, and cases vary greatly. But CMT is almost never life-threatening, and it seldom affects the heart and breathing functions.
And it doesn’t affect intelligence or the spirit. I know of many productive, successful people with CMT — doctors and scientists, artists and singers, athletes and teachers, active teens and students. I know children with CMT who have bright futures. We’ve all learned to strike a balance between adapting to our limitations and surroundings, and living a fulfilling life despite them.
I have the wonderful support of my family and great friends. I’m involved in volunteer projects that help young people with disabilities, advising them on independence and entrepreneurship, and raising public awareness about disability wherever I go. What I’ve learned — and what I try to teach — is that people with disabilities are — like everyone else — full of possibilities and gifts. These, not our limitations, are what matter.
Another important extended family in my life is the Muscular Dystrophy Association, which offers a great program of services, leads the world in CMT research and keeps us well informed about the disease. See the Help Through Services section on this site 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.
As you face the challenges ahead, remember, MDA and all its resources are there to help you and your family. You’re not alone.
George J. Donahue