In 2018, Dwayne Wilson was struggling under the weight of a Pompe diagnosis. Today he is living life to the fullest. Learn how he adjusted his thinking and adapted his life to thrive with Pompe disease.
mobility
A recent Hawaii vacation I took with my wife and friends was incredible, as I wrote in my last column. I’m enthusiastic about sharing even more about my experiences traveling while living with late-onset Pompe disease. I consider myself to be semi-ambulatory and can walk for short periods…
A toddler girl with infantile-onset Pompe disease is able to walk independently and lives with a healthy heart after receiving treatment as a baby, according to researchers who used a combination of early enzyme replacement therapy (ERT) and immunotherapy. Immunotherapy helped tone down the body’s immune…
Age and the use of an assistive device like a walker may tell how well a patient with late-onset Pompe disease will do in a six-minute walk test (6MWT), a small study suggests. The 6MWT is considered a gold standard for determining, through difficulties in walking, the severity of…
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…
The six-minute walk distance (6MWD) test is a reliable measure of declines in motor abilities in people with late-onset Pompe disease (LOPD), a two-year study that evaluated a series of such tests reported. Other common measures of motor function and muscle strength failed to reliably detect such changes in…
An intervention involving whole body vibration therapy showed promise for improving movement ability and muscle composition in a small study involving three children with non-classic infantile-onset Pompe disease. The study, “Vibration assisted rehabilitation in patients with Pompe disease: A case series,” was published in the…
Interruptions to Myozyme enzyme replacement therapy (ERT) regimens during the COVID-19 pandemic led to worsened motor symptoms and poorer respiratory function in patients with Pompe disease, a French study found. These decreases in motor and respiratory function — seen after just a couple of months — were not…
Long-term treatment with Nexviazyme (avalglucosidase alfa) safely and effectively improves lung function and walking ability in children and adults with late-onset Pompe disease (LOPD), according to nearly two years of data from the Phase 3 COMET trial. These findings, along with positive long-term results from the Phase 2…
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…
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