Myotonic Dystrophy

What is Myotonic Dystrophy?

Myotonic Dystrophy (DM) is a muscle weakening disorder which is inherited. It is abbreviated to DM because the Latin name for this condition is 'Dystrophia Myotonica'. In DM, a defective gene causes progressive muscle weakness accompanied by delayed relaxation of muscles after contraction which is called myotonia. It is a multi-systemic disorder, this means that  the effects are not limited to the voluntary muscle system, but can also affect tissues and organs throughout the body. Primarily the muscles of the face, neck, hands, forearms and feet are affected, although DM can have a wide range of different effects on different individuals. For more information about Myotonic Dystrophy click here. 

Click here for the Myotonic Dystrophy Tool Kit

This resource is provided by the Myotonic Dystrophy Foundation based in the USA. Some of the information is not relevant to MDANZ members but the condition information is really good and well worth a look. There is reference to a Health Passport in this resource and this is available in NZ here or by contacting us on 0800 800 337 or email [email protected]

Updated Myotonic Dystrophy Anaesthesia Guidelines

These are available here. 

 2013 MDF Annual Conference - Exercise & Nutrition Updates

Click here for the conference program, which also includes an information sheet and powerpoint presentation

This diagram shows the location of the genetic error which causes myotonic dystrophy,. One copy of the gene with an error is enough to cause the condition. Type 1 is caused by an error in the DMPK gene on chromosome 19 and Type 2 is caused by an error in the CNBP gene on chromsome 3.

Useful Websites

The Myotonic Dystrophy Foundation

Webinars available through the Muscular Dystrophy Association USA  - Former Myotonic Dystrophy Foundation (MDF)  Outreach Director and Support Group Trainer Leslie Krongold is taking all the experience she learnt at the MDF and is using it to start her own series of podcasts with the goal of creating support for people with a chronic illness.  


Here is where we answer some of our members questions. If you have any questions please email them to [email protected] and we will endeavour to answer them.