Muscular dystrophy, the facts / Alan E.H. Emery.

  • Alan Emery
Date:
[1994], ©1994
Catalogue details

Licence: Attribution-NonCommercial 4.0 International (CC BY-NC 4.0)

Credit: Muscular dystrophy, the facts / Alan E.H. Emery. Source: Wellcome Collection.

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    íTj 1, Introduction If you have muscular dystrophy, or you have an affected son or daughter or other affected relative, the first thing to remember is that you are not alone and that there are many others who are similarly affected and share the same worries and concerns. Muscular dystrophy or, more accurately, the muscular dystrophies, since there are many different types, are not uncommon. There are nearly 70 ООО individuals affected with a severe form of dystrophy in the various countries of western Europe and ¿7/ least 40 ООО in the United States of America. It has no predilection for any particular group of individuals but affects all races, all strata of society, and occurs throughout the world. Why then is it not more obvious? The simplest answer is that those with a physical disability often avoid society and, moreover, are often avoided by society. Furthermore, in most forms of dystrophy the resulting disability may not be obvious to the casual observer, and affected individuals often become quite adept at disguising their problems. But for whatever reason muscular dystrophy has, for a long time, been a neglected subject. It began to reach public awareness as a result of television programmes specifically organized for this purpose, such as the Jerry Lewis TV appeal in the United States, and Télethon in France. Both of these raise a great deal of money each year for research and for the treatment of dystrophy. Now at last society is beginning to recognize and appreciate more and more the problems of physical disability which are often caused by dystrophy. This has been partly due to media coverage but also to major advances in scientific medicine in the last few years. For a very long time, and certainly since I first became interested in the subject some 30 years ago, there was a general feeling of powerlessness on the part of the medical profession to deal with a problem which seemed intractable. The dystrophies were recognized as being genetic but there was no way of knowing who carried the gene until perhaps they became affected. And approaches to treatment were often 'stabs in the dark' because their cause was quite unknown.
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