depression

In my last column, as part of “The Pompe Community Diaries” series, I introduced 37-year-old Michael Thames, a behavior analyst from South Carolina who has Pompe disease. When he was younger, Thames was confident in his ability to be self-sufficient. But from the beginning of his training in…

Oftentimes, parents of children with rare diseases don’t have time to focus on themselves. We have so much on our plates because of everything that our children go through. This causes us to push our problems aside, especially when it comes to mental health. I recently found myself…

Experiencing the symptoms of Pompe disease, a rare genetic disorder resulting in muscle weakness, fatigue, developmental delays, breathing difficulties, and heart problems, can have a profound psychological impact on patients and may even lead to depression. Pompe, characterized by the buildup of a type of sugar called glycogen…