The Neuromuscular Disease Network for Canada

funder-logos_nmd4c

Pulmonary support for people with myotonic dystrophy during COVID-19 pandemic

Le français suit

 

New COVID-19-related guidance has been produced for people living with myotonic dystrophy who already use some respiratory support at home or who need it if they get sick. These devices are very important to keep you breathing well, but extra care needs to be taken to make sure they are kept clean and to limit the spread of the virus, as they can increase the risk of virus-infected particles being released into the air.

Many people with myotonic dystrophy do not use ventilation when they are otherwise healthy, but some do use non-invasive ventilation at home. Others may require respiratory support if they contract COVID-19 because their breathing muscles are weaker than normal.

Specific guidelines for myotonic dystrophy patients and their doctors in case of a COVID-19 infection, created by Myotonic and the CHEST Home-Based Mechanical Ventilation and Neuromuscular Disease NetWork, can be downloaded HERE.

You can share these recommendations with your care providers and with any medical providers you have to see. Let them know you have myotonic dystrophy and that these guidelines were developed by leading pulmonologists and neurologists specifically for myotonic dystrophy patients suspected of being infected with COVID-19.

If you use respiratory support at home but are currently healthy, see additional guidance about how to avoid exposure to the coronavirus HERE.

 

***

 

 

 

 

De nouveaux conseils liés à la COVID-19 sont disponibles pour les personnes vivant avec la dystrophie myotonique qui utilisent déjà une aide respiratoire à domicile ou qui en ont besoin si elles tombent malades. Ces appareils sont très importants pour vous permettre de bien respirer, mais il faut veiller à ce qu’ils restent propres et à limiter la propagation du virus, car ils peuvent augmenter le risque de libération de particules infectées par le virus dans l’air.

De nombreuses personnes atteintes de dystrophie myotonique n’utilisent pas de ventilation lorsqu’elles sont en bonne santé, mais certaines utilisent une ventilation non invasive à domicile. D’autres peuvent avoir besoin d’une assistance respiratoire si elles contractent la COVID-19 parce que leurs muscles respiratoires sont plus faibles que la normale.

Les directives spécifiques pour les patients atteints de dystrophie myotonique et leurs médecins en cas d’infection par COVID-19, crées par Myotonic et traduites par NMD4C, peuvent être téléchargées ICI.

Vous pouvez partager ces recommandations avec vos professionnels de la santé et avec tous les intervenants médicaux que vous devez consulter. Faites-leur savoir que vous êtes atteint de dystrophie myotonique et que ces recommandations ont été élaborées par des pneumologues et des neurologues de renom, spécifiquement pour les patients atteints de dystrophie myotonique soupçonnés d’être infectés par COVID-19.

Si vous utilisez une assistance respiratoire à domicile mais que vous êtes actuellement en bonne santé, consultez les conseils supplémentaires sur la manière d’éviter l’exposition au coronavirus ICI.

 

lungs

Read next...

training

Dr. Hanns Lochmüller Presenting at Can-GARD / CCMG The Leading Strand Webinar Series

The Leading Strand webinar series is designed for genetics health professionals, led by the Canadian College of Medical Genetics and co-sponsored by Can-GARD. Speakers will be translation-focused researchers, clinicians and innovators. The series will help attendees anticipate, access, and apply new approaches and technologies for patient care.

Image of publications and text reading "new paper!"

Research Highlight: Study on COVID‑19 in Children With Neuromuscular Disorders

The NMD4C would like to highlight a paper from the Neuromuscular Working Group of the Spanish Pediatric Neurology Society, who have recently published a study which aims to describe the clinical characteristics and outcome of COVID-19 in the pediatric NMD patient population.

BrainRectangularBanner

The BRAIN Conference | Two-day online conference

BRAIN and its Guarantors are excited to announce a new venture: The BRAIN Conference! This two-day conference will feature a selection of fantastic speakers, invited by our conference Chairs from around the globe.

email-3249062_1280

January 2021 newsletter

1) New NMD4C monthly webinar series 2) Update on upcoming conferences 3) Two research participation opportunities 4) New research from NMD4C participants 5) Member spotlight on steering committee member Dr. James Dowling.

canada-nmd4c

NMD4C Year in Review

The NMD4C is proud to be where we are today. It is no easy task to unite a diverse community of stakeholders under a clear and united vision; even more difficult is to do so with the unique challenges every single member of our community faced during 2020.

mdc-grant-now-open-1200x1200-teal

MDC Annual Neuromuscular ‘Seed Grant’ Competition Launch

MDC is very excited to announce that our Annual Neuromuscular ‘Seed Grant’ Competition has launched and are now accepting applications until Feb 2, 2021 for Translational Science Seed Grants and Clinical Health Management Grants.