Duchenne Muscular Dystrophy

What is Duchenne Muscular Dystrophy?

Duchenne muscular dystrophy (DMD) is the most common of nine muscular dystrophy disorders, and is characterized by progressive difficulty in walking and performing everyday activities. This lack of mobility is due to an absence of the protein dystrophin, causing muscles to deteriorate and break down. For more information about Duchenne Muscular Dystrophy click here. 

Wallet Alert Cards

All members with DMD should request to receive one in the mail. If you require a wallet alert card please call 0800 800 337
 FREE
or email info@mda.org.nz.

Click here for the Duchenne Muscular Dystrophy Family Guide

For a printable version click here.

Please note that the Family Guide is available in several other lanuages. For a list of what is available please click here.

 Click this image to be taken to more info about the TREAT NMD app- Diagnosis and Mangement of DMD

 

DMD a team approach to management

For loan or purchase - this guidebook created by MontroseAccess outlines a multidisciplinary approach to the management of DMD and is a must have if you have a patient with this condition.

Contact the MDA National Office on 0800 800 337 /  info@mda.org.nz to order or request a loan.

There are more books available from the MDA Library.

Research

For more information about what is happening in the research area have a look at the Treat-NMD website click here

Creatine Supplementation

Creatine monohydrate is a dietary supplement widely used in the body-building sector purported to cheaply increase muscle mass and gain muscle strength. It's also been used by people with neuromuscular conditions for the same reasons but with a question mark over the evidence for its use. A practice brief, released by the Australian Centre of Research Excellence in Neuromuscular Disorders, supports the use of creatine in Duchenne muscular dystrophy and says that a recent Cochrane review and meta-analysis of dietary supplementation in DMD with creatine monohydrate have provided high-quality evidence of improved muscle strength, performance of activities of daily living, and patient/parent perceptions of health in the short- and intermediate-term.  Click here for more information and dosage recommendations. 

 Physiotherapy

Not all muscles around a joint will weaken at the same time so boys will develop compensatory postures and ways of walking. This leads to tightening and ultimately shortening of these muscles. The goal of stretching is to preserve function and maintain comfort. The program of stretching will be monitored by the physiotherapist but needs to become part of the family's daily routine. Have a look at this important information provided by Parent Project with regards to stretches andphysiotherapy


Report by Dr Günter Scheuerbrandt PhD about exon skipping therapy for boys with DMD:

http://www.treat-nmd.eu/downloads/file/dmd/reports/2013_DMD_Exon_Skip_Report_GS.pdf

Useful Websites

Australia

 Europe 

USA

 

Dystrophin protein is needed for healthy muscle cell function. A genetic fault in the code for this protein means that there is little or no protein manufactured and the muscle cells are easily damaged. This damage builds up over time and leads to the muscle weakness experienced in DMD. Image sourced from http://mda.org/disease/becker-muscular-dystrophy/causes-inheritance