Myotonic Dystrophy

What is Myotonic Dystophy?

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 NZ MDA members but the condition information is really good and well worth a look. Click here. There is reference to a Health Passport in this resource and this is available in NZ here or by contacting the NZ MDA

Updated Myotonic Dystrophy Anaesthesia Guidelines

These are available here

 2013 MDF Annual Conference - Exercise & Nutrition Updates

Click here for the conference presentation, 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.

Vaccination Recommendations

Click here to be taken to the vaccination page.

Respiratory Care

Click here to be taken to the respiratory care page. 

Support Groups

Check out the support groups page to see what is available in your area.

Useful Websites

The Myotonic Dystrophy Foundation

Webinars available through the Muscular Dystrophy Association USA


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