Myotonic Dystrophy

What is Myotonic Dystrophy?

Myotonic Dystrophy (DM) is a muscle-weakening disorder that 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, which 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.

The Myotonic Dystrophy Tool Kit

The Myotonic Dystrophy Toolkit is provided by the Myotonic Dystrophy Foundation (MDF) based in the USA. Some of the information is not relevant to MDANZ members, but the condition information is very good and well worth a look.

There is a reference to a Health Passport in this resource, and this is available in NZ by contacting us on 0800 800 337 or emailing info@mda.org.nz.

Updated Myotonic Dystrophy Anaesthesia Guidelines

These are available here.

Exercise & Nutrition

The Myotonic Dystrophy Foundation (MDF) published an information sheet titled Activity and Exercise Recommendations for Individuals with Myotonic Dystrophy following their 2013 conference.