mobility

Switching from Lumizyme (alglucosidase alfa) to Pombiliti + Opfolda (a combination of cipaglucosidase alfa and miglustat) may help patients with late-onset Pompe disease move around more easily, suggesting a shift toward better quality of life, according to an exploratory analysis of Phase 3 data. The Phase…

Now that summer is here in full force, I’ve been finding things to do with my 6-year-old son, Cayden, and his baby brother, Kyree. We’re now battling a terrible heat wave here in Pennsylvania, which makes going outside miserable. We’ve been experiencing temperatures in the 90s for days on end,…

Last week, we had our first pool day of the summer. I got pool passes for myself and my 5-year-old son, Cayden, who really enjoyed it last year. In fact, he’s been consistently asking to go again. But here in Pennsylvania, summer is the only time it’s warm enough to…

I have this recurring dream where I’m driving a sublime green 2015 Dodge Challenger down the Pacific Coast Highway toward the beach. I call it my “I have no muscle” muscle car. It’s trimmed out in light blue with “Pompe Champ” and “Smashing Pompe” printed on the sides and hood.

A few weeks ago, during my 4-year-old son Cayden’s physical therapy session with his home-based therapist, we had a conversation about mobility devices. Cayden has infantile-onset Pompe disease, which has caused him to have very low muscle tone. He is unable to walk or bear any weight…

All milestones that children reach are important. However, when my son, Cayden, reaches a milestone, it excites me in ways I can’t even explain. When Cayden was diagnosed with infantile-onset Pompe disease at the age of 1 month, I had no clue what to expect. It didn’t help…

One of the symptoms of Pompe disease is muscle weakness. Due to this, many children who have been diagnosed with infantile-onset Pompe disease will be required to wear some type of orthotic braces that are specially designed by an orthotist. When my son, Cayden, was about 15 months old,…

If you have late-onset Pompe disease (LOPD) and are employed, or are considering employment, you’re likely going to need some workplace adjustments, particularly as the disorder progresses. Here’s some information about how Pompe disease might affect your work life. What is Pompe disease? Pompe disease is a debilitating…

Wearable technology that quantifies daily physical activity, such as FitBit One, can help determine mobility patterns and evaluate the clinical status of people with late-onset Pompe disease, a study shows. The study, “Mobility assessment using wearable technology in patients with late-onset Pompe disease,” was published…