DMD - A Guide for Parents

Introduction

Most people reading this booklet for the first time will have just been told that their son (or the child of a relative) has the disorder called Duchenne muscular dystrophy. To be told that a son will lose the ability to walk, the ability to perform most tasks that we take for granted and have a life expectancy far shorter than normal is a distressing experience for all concerned. However, remember that you are not alone. Although there is increasing awareness of muscle problems in children, many people have not heard of muscular dystrophy. They may find it difficult to comprehend that such a serious disease has been diagnosed. Other parents may have an intimate knowledge of the disease because another family member has had it. Regardless, the diagnosis for them is none the less devastating. It can be difficult to understand how a diagnosis of muscular dystrophy has been made especially when parents may not have even realised their child had a muscle problem.

To help parents better understand the diagnosis, the first section of this booklet provides an overview of Duchenne muscular dystrophy, its cause and how a diagnosis is reached. Subsequent sections offer more information on medical, genetic, educational, social, emotional and care issues.

Contents

What Causes Duchenne Muscular Dystrophy?
Diagnosing Duchenne Muscular Dystrophy
Becker Dystrophy
Genetic Counselling
Research and Hope for a Cure

Section 2: Medical and Surgical Care

Physiotherapy
Hydrotherapy
Surgical Support
Respiratory Care
The Heart

Section 3: General Care

Extra Care With Bones
Bowel Management
Sleeping
Dietary Advice

Section 4: Emotional Support

Your Feelings and Ways to Deal with Them
People's Experiences

Section 5: Everyday Living

Support Services and Aids
Education
Finances

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