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Genetic counseling for muscular dystrophy
Genetic counseling for muscular dystrophy (MD) can help you and your family get clarity, guidance, and emotional support when navigating a diagnosis. MD is a broad term for a group of more than 30 inherited genetic disorders that cause progressive muscle weakness and loss of muscle control. MD results from mutations in genes that encode…
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Traveling with muscular dystrophy
For people living with muscular dystrophy (MD), traveling can be challenging. However, with planning, packing, and prepping, traveling with MD is possible. Planning should reflect mobility, breathing, and cardiac issues, as well as medication, equipment, and personal care needs. It is vitally important that both patient caregiver understand what needs to be done before and…
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Fatigue and muscular dystrophy
Although people face a range of physical and emotional challenges when living with muscular dystrophy (MD), one of the most common is fatigue — a deep exhaustion that rest cannot relieve. Around 7 in 10 people with a muscle-wasting condition say that fatigue causes the most daily problems among MD’s long list of symptoms. MD…
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My road trip to finding a community with Duchenne
In recognition of Muscular Dystrophy Awareness Month in September, the Muscular Dystrophy Awareness Month campaign features a series of stories highlighting the real-life experiences of people affected by muscular dystrophy, written in their own words. Follow us on Facebook, Instagram, or X for more stories like this, using the hashtag #MDAwarenessMonth, or read the full…
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Ventilation for muscular dystrophy
In some types of muscular dystrophy (MD), weakened respiratory muscles can lead to hypoventilation — breathing that is too slow or shallow to deliver adequate oxygen and remove carbon dioxide. Ventilation for MD supports lung function by delivering high-pressure fresh air into the airways via a tube attached to a mouthpiece or a tracheostomy opening.…
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Carrying hope forward with resilience in an FSHD family
In recognition of Muscular Dystrophy Awareness Month in September, the Muscular Dystrophy Awareness Month campaign features a series of stories highlighting the real-life experiences of people affected by muscular dystrophy, written in their own words. Follow us on Facebook, Instagram, or X for more stories like this, using the hashtag #MDAwarenessMonth, or read the full…
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Advocates launch new events for Muscular Dystrophy Awareness Month
September is Muscular Dystrophy Awareness Month, and advocates are launching campaigns to educate people about the different types of rare genetic muscle disorders that comprise muscular dystrophy (MD) — and to fundraise to fuel research. Still, the focus is on spotlighting those living with MD, Kelly Berger, community engagement manager at the advocacy group Cure…
