On the cover: Barbara Williams of Clackamas, Ore., first had FSHD symptoms in childhood. Recent surgery has given her less pain and better use of her right arm. 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:

Paul Topkin

Facioscapulohumeral muscular dystrophy (FSHD) has been a part of my family’s life for many years.

My great-great-grandfather had FSHD — and lived to 102! Of the five children in my mother’s family, three were affected, including my mother, who received the diagnosis in her 30s. So when I was 9 years old and my parents saw my “crooked smile,” they knew.

This pamphlet has been prepared to give you the basic knowledge about FSHD that you’ll need to make your life as enjoyable and productive as possible. With this information, you or your children can be prepared for changes to come and armed to minimize many effects of the disease.

By understanding how the disease affects me in different ways, I’ve been able to have a full and rewarding personal and professional life. My wife, Joy, and I have one child and three grandchildren, none of whom have FSHD. I enjoy friends, family and a demanding “hobby” building replicas of historic ships. I’m also an avid collector of U.S. mint stamps and first day covers. Like me, you’ll find ways to strike a balance between doing too much and doing too little. Never think that life is over!

From this pamphlet you’ll learn some encouraging things about FSHD: There are treatments and interventions for most of the symptoms and difficulties that arise with the disease. FSHD doesn’t shorten life expectancy, and for most people it progresses very slowly, giving you time to prepare for and adjust to changes. Unlike some other forms of muscular dystrophy, this one typically isn’t threatening to heart and breathing function.

MDA’s research program is constantly making strides toward better treatments and a cure. In the meantime, it’s good to know that people with disabilities have more opportunities than ever before to develop and use their abilities, as well as legal rights to equal employment opportunity and access to public places. Federal law guarantees children with physical and cognitive disabilities a public education with whatever supports they need.

MDA has been a wonderful ally in my fight against this disease. “MDA Is Here to Help You” introduces MDA’s many services.

As you face the challenges ahead, please remember: You’re not alone. You can have a good life with FSHD.

Paul Topkin
Lakeland, Fla.

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