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Max Fernandez, a senior at Fordham University, has DMD. But his condition hasn’t stopped him from traveling the world and enjoying college life with the help of friends and family. In this video, Max shares his story, as well as challenges, common misconceptions about DMD, along with advice for kids and parents.
How to communicate with you healthcare providers transitioning from childhood to adulthood means moving from a pediatric medical practice to an adult practice—and this is especially important for people with DMD. Knowing what to say to a doctor, and how to say it, can be difficult, but this video has some useful tips. Sarah Tencer, MSW, talks about what to expect in your appointment, how to prepare for it, and what to do afterwards.
Challenging yourself can be scary—but there’s no better way to achieve and grow. In this video, Sarah Tencer, MSW, talks about how setting GROW and SMART goals can provide positive challenges to help you take your life in the direction that you want it to go. She also discusses resilience and identifying the tools that will help you to cope when things don’t go as planned.
Achieving an independent lifestyle is important as people with DMD approach adulthood. In this video, Sarah Tencer, MSW, gives advice on managing money by setting realistic goals, and accessing public benefits. She also offers tips on entering employment, and things to consider when searching for a place to live.
Amaris Sanchez, psychologist and expert in the formation of identity, talks about transitions in DMD medical care. This includes what needs to happen as part of an effective healthcare transition, who is involved and where to go for more information.
Eating well is essential to optimize the well-being and lifespan of people with DMD. In this video, dietitian nutritionist Sandra Arévalo-Valencia talks about how to select meals for healthy weight maintenance and bone health.
Learn about the different stretches your physiotherapist may have recommended to be done at home to help prevent the loss of flexibility that comes with DMD.
These videos are provided as examples only and are not intended to replace any advice given by your healthcare professional.
The stretches demonstrated in the videos should only be carried out if deemed suitable by your healthcare professional.
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PTC Therapeutics does not endorse organizations that sponsor linked external websites, products, or services that such organizations may offer; and does not control or guarantee the currency, accuracy, relevance or completeness of the information found on the linked external sites.
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Date of preparation: September 2022
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Neuromuscular disorders affect the muscles and nerves, and most of the causes are genetic. This means they are either passed down through the family or caused by changes in an individual person’s genes.
Most neuromuscular disorders cause muscle weakness that worsens over time. Signs and symptoms of neuromuscular diseases can vary and may be mild, moderate, or severe.
Most often, when a child has a neuromuscular disease, they don’t grow and develop as fast as other children their age. They are often slow to start lifting their head, sitting, walking, and talking.
Treatment and supportive care may improve the symptoms of a neuromuscular disorder, increasing mobility and even life expectancy.
Muscular dystrophy is the term for a group of neuromuscular disorders that cause muscle weakness and muscle loss.
Duchenne muscular dystrophy (DMD) is a type of muscular dystrophy that causes muscle weakness that worsens over time. The progression and symptoms can vary from person to person.
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