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...Duchenne muscular dystrophy (DMD) is a genetic disorder in which the muscles in the body weaken and break down over time. This...

...Caregivers of individuals living with rare diseases often find themselves navigating uncharted territory. The complicated medical needs, limited treatment options, and lack...

...Stress is one of those factors that can really impact our overall health. Stress can affect the body in many ways, with...

..."Why do you think you would need wheelchair-accessible doors in your home?" I answered simply that I was previously required to obtain...

...Living with a rare disease can mean that emergency room and primary care doctors are unfamiliar with your condition. This can make...

...When your child lives with a rare disease, you expect to make regular visits to the doctor for care. But sometimes the...

..."Oh, you have XYZ disease? Have you tried yoga?" Wow, if I had a nickel for every time someone tossed this cookie-cutter...

...Overstimulation occurs when sensory input overwhelms an individual's ability to process and respond appropriately. For medical caregivers and families, overstimulation can be...

...Living with a genetic condition like congenital adrenal hyperplasia (CAH) can pose unique challenges. But CAH does not have to define a...

...Being a caregiver for someone with a rare disease is an incredibly rewarding yet demanding role. Learning how to advocate for my...

..."Still round the corner, there may wait, a new road or a secret gate." – J.R.R. Tolkien Living in a body with...

...When I was diagnosed with my first rare disease, I got sicker. What? Of course not. Getting a diagnosis doesn't change how...

...People with X-linked hypophosphatemia (XLH) develop a wide range of symptoms such as weak bones and teeth, fractures, fatigue, and muscle weakness...

...Shortness of breath and fatigue are common symptoms of lung conditions. These issues can make it hard to want to exercise. They...

...X-linked hypophosphatemia (XLH) is a rare genetic disorder that affects the whole body. A person with XLH does not process the nutrient...

...We're used to others medically gaslighting us – but what about when we do it to ourselves? In a previous article, I...

...Medical tests are not enjoyable by any means but that doesn't mean one won't feel eager to have a medical test performed...

...Getting a new rare disease diagnosis can be a difficult undertaking. Some conditions, such as narcolepsy, are so misunderstood that it can...