Things seemed to be happening so fast as 2018 was ending. But it would go down in my books as the worst year of my life. Seven months earlier, back in April, we lost our oldest son, Adam, to a brain tumor. He was only 22 years old and full…
support groups
I will always be grateful I found our Pompe disease family. It brings me great joy when others find us and join the community, too. A Facebook blog I made for my 3-year-old son, Cayden, started off fairly small. But over the…
The diagnosis of a chronic, progressive disorder such as Pompe disease for yourself or a family member can be life-altering. Psychological support can help reduce the added stress and negative emotional impact of such a diagnosis on you and your family. The following will provide some information about the…
Health Insights
Support Groups for Pompe Disease and Their Importance
Rare and chronic conditions such as Pompe disease can take an emotional toll on patients and caregivers on top of everything else. Between symptoms such as muscle weakness and fatigue, and feelings of isolation, coping can be a challenge. It may seem as if hardly anyone understands what…
Recent Posts
- How a Pompe disease diagnosis both tested and transformed our marriage
- New Phase 2 trial tests oral add-on therapy for late-onset Pompe disease
- My journey of learning how to explain Pompe disease to others
- Early trial of late-onset Pompe disease drug yields positive results
- Part of our journey was learning how to talk to our children about Pompe