source: Scottish Muscle Network Physiotherapy Group
Marina Di Marco
Duchenne Muscular Dystrophy (DMD) is often described in the literature as a relentlessly progressive muscle wasting disorder that affects mainly boys. It affects 3:10000 live male births across the world and without intervention, young men will rarely live beyond 19 years. There are some instances where females may show similar symptoms and disease progression but are affected to a lesser degree. These females are known as manifesting carriers.
In recent years medical advances have not only progressed in the area of diagnosis but also in treatment and management. Life expectancy has improved and many can expect to live into their 20’s and 30’s. In some countries such as Denmark and Holland, where management of this condition has been treated as a specialist area for many years, reaching the fifties is not unusual.
This booklet has been written to assist physiotherapists, to offer effective intervention at the different stages of Duchenne Muscular Dystrophy. Many physiotherapists have expressed a desire for a care pathway or indeed a clinical guideline, as keeping abreast of the changes in management and policy can be difficult. This is particularly relevant where a therapist is newly qualified or has a generic caseload with many different conditions to take account of. This booklet aims to highlight current practice in this field and direct the reader to useful resources where appropriate.
This booklet has been written with the collaboration of experienced therapists from around Scotland and is intended for the Scottish physiotherapy service. It reflects current care offered and delivered in Scotland. An extensive literature review was undertaken and in the absence of a very strong or strong evidence base (relating to levels 1 and 2 of Sackett’s levels of evidence), expert opinion has been sought using group consensus from experts in the field.
This aim of this booklet is to assist healthcare professionals make clinical judgements and provide information to help with the decision making process. Appendices one to six will offer assessment protocols and an explanation of current practice.
Queen Elizabeth University Hospital,UK