Resources

Find a host of resources to support you and your family members living with DM. Access information on how to better manage symptoms, patient advocacy groups, online support resources, and more.

Managing DM. Myotonic dystrophy symptoms tend to worsen gradually over several decades. While no treatment exists that slows the progression of myotonic dystrophy, management of its symptoms can greatly improve quality of life. Taking steps early to prevent or treat problems as they come up can help avert complications. 

Myotonic Toolkit, produced by Myotonic.  Myotonic has created an easy-to-use Toolkit with the guidance of the Myotonic medical and scientific advisory committee.  The Toolkit includes valuable information for affected individuals and their families, detailed information and resources for medical professionals, Myotonic Dystrophy: The Facts, by Prof. Peter Harper, a wallet-sized medical alert card, a medical history sheet and much more.

Financial Resources for People Living with DM offers a compilation of financial resources available on a federal/national level for people living with myotonic dystrophy in the United States. The information was compiled by Dr. Leslie Krongold, a member of the extended Myotonic team, a DM support group leader and a DM community member.  Click here to go directly to the document, or click here to download the information as a PDF.

Anesthesia Guidelines. Regardless of the form of DM or the severity of DM symptoms experienced, individuals can have severe and life-threatening reactions to anesthesia and should be monitored carefully whenever anesthesia is administered.

Myotonic Warmline. Professionally staffed phone and email support for people living with myotonic dystrophy, their caregivers, medical professionals and others interested in support, guidance, advice and resources for myotonic dystrophy.

PATIENT ADVOCACY GROUPS:

Myotonic

Treat-NMD

Muscular Dystrophy Association

ONLINE SUPPORT RESOURCES

Myotonic Dystrophy Support Group