International Myotonic Dystrophy Day Date in the current year: September 15, 2024

Myotonic dystrophy (also known as dystrophia myotonica, abbreviated as DM) is a type of muscular dystrophy. Muscular dystrophy is an umbrella term for a group of genetic neuromuscular diseases that cause progressive weakness and loss of skeletal muscles. In myotonic dystrophy, muscles are unable to relax normally after contraction.

Although DM is often viewed as a muscle disorder, it may affect other organs and systems, and produce a variety of symptoms such as arrhythmia, ADHD, ASD, breathing difficulties, cataracts, cognitive impairment, dysarthria and dysphagia (slurred speech and trouble swallowing), diabetic symptoms due to insulin resistance, excessive daytime sleepiness, and gastrointestinal issues. It should be noted that any single individual with DM is highly unlikely to have all or even most of the symptoms associated with myotonic dystrophy.

There are two distinct types of myotonic dystrophy caused by mutations of two different genes: DM1 and DM2. In general, DM1 is more severe than DM2. Myotonia is more prominent in DM1 than in DM2, plus it affects more systems and can onset at any age. In contrast, DM2 affects fewer systems and develops only in adulthood. The most severe form of myotonic dystrophy is congenital DM1 that onsets at birth and can have life-threatening symptoms. The age of onset, the severity of the symptoms, and the organs and systems affected may vary greatly between individuals.

Myotonic dystrophy, just like any other type of muscular dystrophy, has no cure or specific treatment that can slow its progression. Its management is symptomatic and focused primarily on complications, especially those that are potentially life-threatening due to affecting the lungs and heart. Symptomatic treatments include medications, rehabilitative therapy, and devices (braces, pacemakers, CPAP machines, and others as needed). Surgery may be used as a last resort for dealing with gait abnormalities or cataracts.

International Myotonic Dystrophy Day is an annual awareness campaign promoted by more than 50 myotonic dystrophy-focused organizations around the globe. It aims to raise DM awareness among the general public, bring together researchers, pharmaceutical companies, healthcare professionals, policy makers, and other stakeholders to facilitate DM research and drug development, and improve access to diagnosis, treatment, and care for DM patients.

There are many ways to get involved with International DM Day. You can learn more about the disorder to better understand the struggles of living with myotonic dystrophy, donate to an organization that supports DM patients and/or funds DM research, wear green to start conversations about myotonic dystrophy, buy International DM Day merchandise to support the awareness campaign, and spread the word on social media with the hashtags #MyotonicDystrophy and #MyotonicDystrophyAwareness.