A few days ago, I stumbled across Caroline’s old infusion backpack tucked away in the far corner of her closet. For a second, I barely recognized it — soft and pastel, the color of cotton candy, and shaped like a unicorn cat — it was so clearly a piece of…
Discussion
A lung function test called intrabreath oscillometry may detect abnormalities related to late-onset Pompe disease (LOPD) that standard breathing tests would miss, a new study shows. Findings suggest that intrabreath oscillometry may be more reliable than a standard test called spirometry at detecting weakened chest muscles in people with…
Discussion
The first day of school is usually about freshly sharpened pencils, new backpacks, and figuring out where to go after lunch. But for my daughter Caroline, the first day this year was about feeling anxious — not just about the first day, but about whether she would make it through…
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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