DMD - A Guide for Parents
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
IT IS IMPORTANT TO UNDERSTAND THAT THE INFORMATION IN THIS BOOKLET REFERS ONLY TO DUCHENNE MUSCULAR DYSTROPHY AND NOT TO OTHER FORMS OF MUSCLE DISEASE WHICH MAY DIFFER MARKEDLY IN THEIR CLINICAL, GENETIC AND OTHER ASPECTS.
Section 1: An Overview
What Causes Duchenne Muscular Dystrophy?
Extra Care With Bones
Your Feelings and Ways to Deal with Them
Support Services and Aids
History | Logo | MD Centre | Mission | Partmerships | Policies | Employment | Calendar | Clinical | Glossary | Links | Duchenne | ED | FSH | LGD | Myotonic | Mitochondrial | SMA | Newsletters | Genetics | InfoMD | PEG | 101 | Physio | Recreation | Resources | Respiratory | Scoliosis | Media | Ryan's Cafe | CampMDA | ChallengeMD | Forum | NMDRC | Wheelie's Rest | Programs | Futures | Respite | CINRG | Glossary | Clinics | Bequests | Donations | Fundraising | InMemory | MDAngels | Volunteers | Workplace Giving