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NewsRSSWednesday, April 22, 2026 · 2 days ago

At 12, I Couldn’t Gain Weight With Pompe Disease, but at 35, I Struggle to Lose It

WHY IT MATTERS

This personal account highlights how Pompe disease's metabolic effects evolve with age and treatment, which can help newly diagnosed patients and families understand what to expect as they grow older.

A person with Pompe disease shares how their weight challenges changed over time. As a child, they couldn't gain weight and stayed at 60 pounds. Now as an adult at 35 years old, they face the opposite problem and struggle to lose weight. This shows how Pompe disease can affect the body differently at different life stages.

Because I have Pompe disease, I was stuck at 60 pounds from childhood to adulthood. Fast forward to today, and things are a little different. The post At 12, I Couldn’t Gain Weight With Pompe Disease, but at 35, I Struggle to Lose It appeared first on Rare Disease Advisor

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pompe diseaseweight managementmetabolismpatient perspectivelife stages

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