Switching to Nexviadyme (avalglucosidase alfa) may help stabilize declining walking ability in adults with late-onset Pompe disease whose symptoms worsen despite treatment with Myozyme (alglucosidase alfa), according to a real-world study from France. Researchers found that the group’s decline in walking ability halted during the first year…
Discussion
After my daughter Caroline was diagnosed with Pompe disease, the question that kept me up at night wasn’t what had happened or how. It was why. Why did this happen to her? Why our family? And why me? I immediately began replaying my pregnancy. My husband and I had…
Discussion
Children with Pompe disease receiving enzyme replacement therapy (ERT) generally maintained stable breathing during sleep, although some may continue to experience sleep-related respiratory issues requiring ongoing monitoring, a study in France suggests. Sleep studies showed normal oxygen levels overnight among children with Pompe, while also identifying a small…
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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