Mattie Stepanek’s story is well-known in the MD community. Mattie was the youngest of four children, all of whom died in childhood from complications due to the genetic neuromuscular disorder, dysautonomic mitochondrial myopathy. MORE: Musclar dystrophy quote: Mattie Stepanek Mattie touched the hearts of millions of Americans and was a…
Using cannabis or marijuana for medicinal purposes is a hot topic right now among patients and health practitioners. It’s regularly touted as a pain reliever for many chronic illnesses. According to the National Cancer Institute, here are some of the facts about medical marijuana and its suggested uses: It’s…
The Muscular Dystrophy Association, in collaboration with the Lewin Group, has calculated the average cost of caring for three of the most common neuromuscular disorders. MORE:Â Study reveals wide global disparities in prevalence, burden, cost, and treatment of DMD. The study looks at both medical and…
This video from Muscular Dystrophy UK is all about 16-year-old Karis Williamson from Inverness, Scotland. Karis used to love going to school, but as she got older, she found it frustrating and felt like an unvalued member of the class. Feeling left out and like a burden, she…
A neuromuscular disorder diagnosis will have a profound effect on the whole family. Younger siblings often don’t fully understand what a neuromuscular disorder is or what it means for their brother or sister. MORE: How to talk to your child about their neuromuscular disorder. It’s best to be upfront and…
This video from Muscular Dystrophy UK is all about Hayleigh Barclay. Hayleigh is a 27-year-old woman from South Ayrshire, Scotland, who has spinal muscular atrophy (SMA) type 2. MORE: Teen with muscular dystrophy launches YouTube gaming channel to highlight the disease. Hayleigh’s passion is music and film.
Parent Project Muscular Dystrophy offers a mobile app that can help Duchenne MD patients and caregivers get the most out of appointments with their healthcare team and keep up to date and on all the latest news about the disease. MORE: Coping with your child’s neuromuscular disorder diagnosis. The…
In this video from Muscular Dystrophy UK, two teenagers share what it’s like living with the disease and some of the frustrations they experience on a day-to-day basis. MORE:Â How service dogs can benefit people with neuromuscular disorders. Fourteen-year-old Sam from Cheltenham and 13-year-old Zoe…
A powerful new genome editing tool clustered regularly interspaced short palindromic repeats or CRISPR/Cas9 could offer a solution in the treatment of Duchenne muscular dystrophy (DMD). CRISPR/Cas9 mimics the way bacteria works by eliminating the DNA of invading viruses and replacing it with part of its own DNA, slicing into the DNA and rebuilding…
Having a service dog can greatly enhance the life of someone living with muscular dystrophy. They allow patients to regain some of their independence by helping with small everyday tasks like opening and closing doors, fetching meds, acting as a prop or support as their owner stands, switching on lights and attracting attention…
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