As the mother of an 8-year-old with late-onset Pompe disease, I think about her future a lot, but not in an obvious or dramatic way. I’m not always sad or anxious; like any mom, I’m busy getting the kids to school, making dinner, and juggling the chaos of family…
Discussion
High levels of anti-drug antibodies can reduce the availability of Myozyme (alglucosidase alfa) and the amount of the therapy that reaches cells in patients with classic infantile Pompe disease, a study found. Myozyme, the first enzyme replacement therapy (ERT) approved for Pompe disease, is sold as Lumyizyme…
Discussion
When you raise a child with a rare disease, it is easy to become consumed by your own version of that disease. You learn your child’s numbers, memorize the medical terminology, track appointments, and pay attention to every change that might mean something. You become familiar with the research, the…
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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