People often ask how my daughter Caroline handles her infusions. The answer changes depending on the season of life we’re in. Sometimes even the day. When Caroline was a baby, accessing her port was so hard. She didn’t understand what was happening — only that strangers held her down…
Discussion
Quantitative MRI (qMRI) may detect muscle changes in people with late-onset Pompe disease (LOPD) before clear declines are seen on standard clinical tests, a study found. The study also revealed that MRI changes tracked with measures of muscle strength, physical function, and patient-reported symptoms over two years of follow-up.
Discussion
Tomorrow, my daughter Caroline has an infusion. If you asked her about her summer excitement, she’d talk about the pool. The weather has been beautiful, and we’ve taken full advantage. In these first days of summer, she splashes with friends, races barefoot across the deck, begs for “just five more…
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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