depression

Getting help for my depression helps me to be a better parent

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…

Pain in Patients on Enzyme Replacement Therapy Unlikely Due to Nerve Damage

Pain is relevant but appears to be unrelated to damage to small nerve fibers in the skin of late-onset Pompe disease patients who are using enzyme replacement therapy, a study found. The study, “Small fiber involvement is independent from clinical pain in late-onset Pompe disease,” was published in…

Recent Events Have Taken a Toll on My Mental Health

Every time I experience something scary with my 3-year-old son, Cayden, it really takes a toll on my mental health. While this is to be expected, it’s certainly not easy to deal with.  I fell into a deep depression after Cayden was diagnosed…

Recreational Therapy for Late-onset Pompe Disease

Living with a chronic disorder such as late-onset Pompe disease can lead to anxiety, stress, and feelings of isolation. If you have the disease, recreational therapy may help to improve your psychological and physical well-being. What is Pompe disease? Pompe disease is a debilitating and progressive disorder that’s…