4 Realities of Living With Advanced Symptoms of a Rare Disease...As someone living with advanced lung disease due to a rare disease called cystic fibrosis, I am all too familiar with the...reactionscomments
Cost of Living With a Rare Disease...Rare diseases are expensive. Anyone "living rare" likely knows that firsthand. Without a correct diagnosis, you may receive inappropriate care. Or you...
Building Your Child's DMD Care Team...Caring for a child with Duchenne muscular dystrophy (DMD), a condition that makes muscles weaker over time, will likely involve a team...reactionscomments
Practical Tips for Managing Day-to-Day Life With DMD...Living with Duchenne muscular dystrophy (DMD) can bring many challenges each day. As a caregiver, you play a very important role in...reactionscomments
Treatments for Duchenne Muscular Dystrophy...Duchenne muscular dystrophy (DMD) is a genetic disorder in which the muscles in the body weaken and break down over time. This...reactionscomments
The Importance of Connecting With Mentors as a Caregiver...Caregivers of individuals living with rare diseases often find themselves navigating uncharted territory. The complicated medical needs, limited treatment options, and lack...reactions5comments
Building a Caregiving Team: Finding In-Home Help...Life with a rare disease can require extra at-home help and support. This care varies by person and ranges from skilled hands-on...
Understanding Duchenne Muscular Dystrophy...Duchenne muscular dystrophy (DMD) is a rare genetic disorder that causes muscle weakness and degeneration that gets worse over time. It is...reactionscomments
Managing Stress and Chronic Illness...Stress is one of those factors that can really impact our overall health. Stress can affect the body in many ways, with...reactionscomments
Why I Made My Home Wheelchair Accessible Sooner, Not Later..."Why do you think you would need wheelchair-accessible doors in your home?" I answered simply that I was previously required to obtain...reactions3comments
Webinar: Emergency Preparedness Workshop...Living with a rare disease can mean that emergency room and primary care doctors are unfamiliar with your condition. This can make...reactions2comments
Children and Rare Diseases: Tips for Navigating Emergency Care...When your child lives with a rare disease, you expect to make regular visits to the doctor for care. But sometimes the...reactionscomments
Yoga Doesn't Cure My Autoimmune Diseases..."Oh, you have XYZ disease? Have you tried yoga?" Wow, if I had a nickel for every time someone tossed this cookie-cutter...reactions12comments
Managing Overstimulation as a Parent...Overstimulation occurs when sensory input overwhelms an individual's ability to process and respond appropriately. For medical caregivers and families, overstimulation can be...reactionscomments
Living With Congenital Adrenal Hyperplasia...Living with a genetic condition like congenital adrenal hyperplasia (CAH) can pose unique challenges. But CAH does not have to define a...reactionscomments
20 Essential Self-care Practices for Rare Disease Caregivers: My Journey to Resilience...Being a caregiver for someone with a rare disease is an incredibly rewarding yet demanding role. Learning how to advocate for my...reactionscomments
How I Travel With a Chronic Illness..."Still round the corner, there may wait, a new road or a secret gate." – J.R.R. Tolkien Living in a body with...reactionscomments
After a Rare Disease Diagnosis: My Avalanche of Comorbidities...When I was diagnosed with my first rare disease, I got sicker. What? Of course not. Getting a diagnosis doesn't change how...reactions3comments
Doctors and Specialists Who Treat X-Linked Hypophosphatemia...People with X-linked hypophosphatemia (XLH) develop a wide range of symptoms such as weak bones and teeth, fractures, fatigue, and muscle weakness...reactionscomments
Exercising When You Have a Lung Condition...Shortness of breath and fatigue are common symptoms of lung conditions. These issues can make it hard to want to exercise. They...reactionscomments
