This year, Thanksgiving felt quite special. For starters, it was the first time I celebrated with both of my kids. My youngest, Kyree, turns 1 three days after Christmas, and so far, his first holiday season has been so much fun. As I reflected over the holiday, I took some…
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Over the summer, I lost someone very dear to my heart. My grandfather passed away on July 18 at 75 years old. It took me quite some time to come to terms with his death, even though we knew it was coming. I still find myself in tears when I…
A man with late-onset Pompe disease (LOPD) was initially misdiagnosed with an inflammatory muscle disease called polymyositis, according to a case study highlighting the need to incorporate imaging tests in clinical practice to reduce the delay in diagnosis and treatment. After medication failed to improve his muscle strength, the…
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…
Explaining death to a child isn’t so easy. Columnist Keara Engle put it in terms that her son with Pompe disease could better understand.
Check out Pompe Disease News‘ collection of health insights, where you can find more information and guidance.
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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