Care Guides for Myotonic Dystrophy
Myotonic dystrophy type 1 (DM1) represents the most common form of muscular dystrophy in adulthood. DM1 affects between 1 in 3,000 and 8,000 individuals globally and has an estimated prevalence in Europe of 10 to 12: 100,000. The variability of this disease has been a challenge for treatment development and research. There is currently no casual therapy for this condition and symptomatic treatment may not always be satisfactory or inconsistent.
Standards of Care for DM1
There are yet no global standards of care established for DM1 however in 2018 The Myotonic Dystrophy Foundation (MDF) announced the publication of the first-ever Consensus-based Care Recommendations for adults with DM1. These guidelines are the result of a collaborative work involving 66 international and highly experienced clinicians and aims to standardised and improve care for people living with DM1 around the world.
Consensus-based Care Recommendations for adults with DM1
Quick Guide of Consensus-based Care Recommendations for adults with DM1
Myotonic Dystrophy Guide for Families
At the moment the is not a family guide in myotonic dystrophy however the Myotonic Dystrophy Foundation have produced a toolkit for individuals living with DM and their caregivers. This fantastic resource includes valuable information to educate and support individuals with Myotonic Dystrophy and their families, It is available in five different languages (English, French, German, Icelandic and Spanish) and hard copies can be downloaded or requested directly through the MDF page.
