DMD – A Guide for Parents
Most people reading this booklet for the first time will have just been told that their son (and very rarely daughter) or the child of a relative has the disorder called Duchenne muscular dystrophy. To be told that a child 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.
The contents of the DMD – A Guide for Parents are listed below and the link to the full document in PDF format is listed below this section.
Section 1: An Overview
Cause of Duchenne Muscular Dystrophy?
Diagnosing Duchenne Muscular Dystrophy
Research and Hope for a Cure
Section 2: Medical and Surgical Care
Section 3: General Care
Extra Care with Bones
Section 4: Emotional Support
Your Feelings and Ways to Deal with Them
Section 5: Everyday Living
Support Services and Aids
Muscular Dystrophy Australia can link parents with another family for this kind of support. Both MDA and other families with a child with Duchenne muscular dystrophy, have a very good idea of how parents feel and will not impose themselves. Help is available when it is required.
For further information on any of the areas discussed above, please contact MDA:
Phone: +61 3 9320 9555
Revised: 3 July 2018