Understanding Myotonic Dystrophy 

Myotonic dystrophy is a form of muscular dystrophy in which the muscles have difficulty relaxing. Muscle myotonia (abnormally prolonged muscle contraction, with difficulty relaxing) may develop soon after birth or begin as late as early adulthood, especially affecting the hands, wrists and tongue. 

  • Myotonic dystrophy is part of a group of inherited disorders called muscular dystrophies. 
  • There are two major types of myotonic dystrophy: type 1 and type 2. Their signs and symptoms overlap, although type 2 tends to be milder than type 1. 
  • It is the most common form of muscular dystrophy that begins in adulthood 
  • Myotonic dystrophy affects at least one in 8,000 people worldwide and effects both males and females equally. 
  • About half of those with the disorder show visible signs by their early twenties, but a significant number do not develop clear-cut symptoms until after age 50. 
  • Prolonged muscle contractions (myotonia) and the inability to relax certain muscles after use 
  • Slurred speech or temporary locking of their jaw 
  • Clouding of the lens of the eye (also known as cataracts) 
  • Abnormalities of the electrical signals that control the heartbeat 
  • In affected men, hormonal changes can lead to early balding and fertility issues. 


Muscular Dystrophies & NMD’s Overview 
Understanding Myotonic Dystrophy

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How can CPL help?


Allied Health therapies

Myotonic Dystrophy can present at any time, but onset usually occurs around 20 and 30 years of age. CPL's Allied Health team can support people who have Myotonic Dystriphy to help them reach their goals. This can include speech, physical and occupational therapies speech therapy.

Support at home 

CPL can support you with day-to-day tasks, depending on your needs, from getting ready for school, university or work, right through to mealtime assistance and medication.

Independent living

CPL provides 24/7 Supported Independent Living services, and has a number of vacancies in accessible homes.

Employment and Training opportunities

There are a range of disability employment and training pathways to help people who have Myotonic Dystrophy to re-enter or join the workforce.