A woman in Canada with atypical and slowly progressive onset of muscle weakness affecting her eyelids, face, and throat muscles had shown symptoms for decades before being diagnosed with late-onset Pompe disease (LOPD), according to a study describing her case. Doctors considered several neuromuscular diseases before arriving at the…
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As summer approaches, I’ve been thinking a lot about whether I want to move my children into a new house. We could use another bedroom, as I have three little boys now, and my youngest, Kylan, who’s 7 months old, will be ready to transition out of my bedroom soon.
In my last column, as part of “The Pompe Community Diaries” series, I introduced 59-year-old Steve Bersani, who lives with Pompe disease and served in the Boston Police Department for 30 years before retiring in 2018. In recent video chats with Bersani, we discussed the issues he faces…
Becoming educated and informed about Pompe is a good first step. Here you’ll find general information about the disease, including diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnist’s words of wisdom to help you along on your Pompe journey.
There is no cure for Pompe yet, but there are treatments that can help manage the disease. Learn more about current therapeutic approaches here.
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