Myotonic Dystrophy: Support and Care

Welcome to our support and care page. Although almost everyone experiences myotonic dystrophy (DM) symptoms with different levels of severity and on a different time track, here you can learn about symptoms and when they tend to manifest, and find tools to help you navigate this complicated disease.

The best place to begin is our FAQs. Here, we’ve pulled together the most up to date information for a range of information-seekers – from the person newly diagnosed to the physical therapist seeking exercise guidelines.

People Living with Myotonic

We urge you to watch this video featuring community members living with DM. They describe their individual experiences and varying symptoms, and how they are coming to terms with managing the disease.

The way you encounter or experience DM symptoms will likely be unique and unpredictable – as is seen even within members of the same family. On this site, we aim to give you the information and support to manage symptoms so you can improve your quality of life with the help of your multidisciplinary care team.

Our comprehensive toolkits and clinical care recommendations are the first resource you’ll want to share with your clinician(s), as early intervention can reduce or avert complications that may arise.