November 15, 2000

ON THE POWER OF INFORMATION TO MAKE LIFE BETTER

Cutting-edge research seeking treatments and cures... medical attention from neuromuscular disease specialists at MDA clinics... a priceless week of fun for kids at MDA summer camps...

Those are all important ways that MDA works to make life better for families facing neuromuscular diseases. But there's another crucially important way that MDA helps -- by providing information.

MDA disseminates vital and accurate information not only through our bimonthly magazine, Quest, but also through The ALS Newsletter, disease-specific brochures, books such as "Journey of Love: A Parent's Guide to Duchenne Muscular Dystrophy," videos about such topics as respiration and living with ALS, speeches and seminars, and our 1,100-page interactive MDA Web site.

We've learned that good, accurate information can have a dramatic, even transformative, impact on the lives of those we serve. From time to time, individuals have written in to let us know how information imparted by MDA has positively affected their lives.

Take the case of a young woman in Portland, Ore., with periodic paralysis who dreamed of getting married and having a child. Where could she find sound medical information relevant to her particular situation?

Fortunately, she found an article in Quest ("A Baby? Maybe" in vol. 4., no. 6.) about the implications of pregnancy for women with neuromuscular diseases. She took the article to her doctor and used it as a starting point for discussions about having a family. Through MDA she got in touch with another woman with periodic paralysis who'd given birth several times.

The Portland woman got married -- and had a baby boy in May 1999.

For another example, a mother in Weatherford, Texas, wrote to MDA: "Our 8-year-old son was diagnosed with Duchenne muscular dystrophy in 1998. We were very scared and saddened by this disease and we started researching everything and studying it. Until we got our first issue of Quest, we were lost. Your magazine is so very helpful to us, and we never realized all the products and services that were available for our son. The school and our child psychologist were very interested in your article, 'The Brain in Duchenne Dystrophy: Learning Disabilities' (vol. 4, no. 1). You were right on track with that one."

Rafael Velez is an attorney from Hartford, Conn., who learned he had Emery-Dreifuss muscular dystrophy by reading an MDA pamphlet.

We've heard from people who endured debilitating weakness and other problems for decades without knowing what disease affected them, only to see their symptoms described in unerring detail on our Telethon or in our publications.

One such instance involved an attorney in Hartford, Conn., who had always lived an active life but experienced persistent muscular difficulties. A doctor told him he didn't have an audible heartbeat and he needed a pacemaker.

Many years later the attorney picked up some MDA literature and read about a neuromuscular condition involving heart block, called Emery-Dreifuss muscular dystrophy. The diagnosis was confirmed at an MDA clinic. After decades, the man at last could put a name on his lifelong illness.

Aristotle said that all men by nature desire knowledge.

Magnify that sentiment a hundred times and you'll have an idea of how important information is to families fighting the muscular dystrophies and related disorders.

MDA will continue to work hard to empower these families by providing hard-to-find medical information and helpful stories of how others are handling the ongoing challenge of living with neuromuscular illness on a daily basis.

With every best wish . . .

The Ross Report Archive