New Resources & Updates for Myotonic Dystrophy, Beckers and Duchenne muscular dystrophies
New resources are now available for individuals and families affected by myotonic dystrophy, Becker and Duchenne muscular dystrophies. The Myotonic Dystrophy Foundation has released a heart health guide for those living with myotonic dystrophy type 1 and type 2. A comprehensive Becker Muscular Dystrophy Guide for Families is now accessible in English, and other languages, providing essential information for the global Beckers community. Additionally, Ireland’s first national care pathway for Duchenne muscular dystrophy (DMD) has been approved and will soon be published by the HSE — a key milestone toward improved care and advocacy.
Myotonic Dystrophy
For individuals living with myotonic dystrophy, heart or ‘cardiac’ issues can pose a serious threat to their health. Since the heart is a muscle, people living with myotonic dystrophy type 1 (DM1) or type 2 (DM2) may experience cardiac issues. The Myotonic Dystrophy Foundation has released a guide that aims to help people living with DM understand heart health risks and how they are managed. Click here to access the guide!
Becker Muscular Dystrophy Guide for Families
The “Diagnosis and Management of Becker Muscular Dystrophy: Guide for Families” is now available in English. This resource is the first of its kind, specifically designed to support Becker muscular dystrophy (BMD) patients and their families worldwide.
Originally published in Italian in 2021 by Parent Project, the guide was developed with the invaluable contributions of numerous specialists who have dedicated years to patient care. Thanks to a collaborative effort between Parent Project and TREAT-NMD, the guidelines have been translated into Spanish, Dutch, German, French, and now English.
This guide offers an accessible yet comprehensive overview of BMD, providing essential information on the condition’s many aspects. Download the guide on the following link: Diagnosis and management of Becker muscular dystrophy. Guide for families
DMD care pathway
The National Rare Diseases Office have developed a series of integrated care pathways for rare conditions. These care pathways are based on clinical practice guidelines and developed in collaboration with Irish clinical specialists and patient/lived experience experts. Duchenne muscular dystrophy was one of the 29 selected conditions for care pathway development. This pathway has been in development for several years, with contributions from some MDI members. It’s just been approved by the HSE Clinical Forum and it will be available on the HSE website soon. As soon as it’s published, we’ll share it on our website too.
It is great to have a national care pathway for DMD that’s relevant to the Irish context. As we welcome this significant development, we will continue our advocacy work to support its implementation.