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…
Discussion
When people meet my daughter Caroline, they often call her brave. They see a little girl enduring enzyme replacement therapy every other week, the port in her chest, long infusion days, doctor’s appointments, blood draws, and tests. She smiles through experiences that would make most adults cringe, and people…
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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