If you’re the parent of a child with a rare disease, or if you have a rare disease yourself, you’re likely accustomed to juggling various appointments with rare disease specialists. My 4-year-old son, Cayden, sees many different specialists due to his infantile-onset Pompe disease. Recently, we had an…
Travel
Flying can be an ordeal for many people with disabilities who rely on wheelchairs to get from point A to point B. Sometimes disabled travelers get to their destination only to realize their wheelchair or scooter is broken or missing. In 2019, the year after airlines were required to release…
Most people love the beach. Whether it’s your first time going to the beach or not, seaside vacations, and traveling in general, are almost always enjoyable. But what if you can’t get to the ocean once you’re there? Disabled individuals must find other ways…
Cumbersome security procedures, rising airfares, and shrinking legroom have made commercial air travel difficult enough these days — even for healthy passengers. Imagine how much harder it is for patients with rare diseases who must get to doctors’ appointments or clinical trials that are hundreds of miles away from home.
Recent Posts
- Raising a child who has never known life without Pompe disease
- Staying on Pompe therapy during pregnancy, breastfeeding is safe: Study
- Watching my daughter suffer through infusions is an emotional tug-of-war
- Noninvasive muscle test may measure Pompe disease severity: Study
- Learning to translate the language of Pompe disease