Aug 5, 2021 | PATIENTS
I was diagnosed in 1991 at age 22 with AMD. I also have a sister who is severely affected by the disease. She was diagnosed 13 years ago at age 20. In college, I began to notice that it was getting difficult to walk upstairs. I would get very winded, and my muscles...
Aug 5, 2021 | PATIENTS
December 2004 Several months ago, I was given the opportunity to write a paper about an experience that changed my life. I wrote about being diagnosed with Pompe’s disease. I found that writing about my experiences was a good experience for me. To read this paper,...
Aug 5, 2021 | PATIENTS
At 16 years of age, Robin was an accomplished violinist and had just won a major regional competition when she came down with flu symptoms. Severe fatigue and weakness followed, and she could no longer attend school. A year later she was finally diagnosed with AMD....
Aug 5, 2021 | PATIENTS
Hello everyone. My name is Jill, and I have a story to tell about my amazing and fearless son, Thomas. Thomas was born on Sept. 6, 2002. His trip was less then smooth. Although he looked like a beautiful and healthy 10lb 9oz baby boy, he had some problems with his...
Aug 5, 2021 | PATIENTS
I was diagnosed with Pompe in my mid-20’s after losing weight for several years. I am now in my early 30’s and feeling better than I was when I was diagnosed. I had a typical childhood. I swam on the swim team during the summertime, and during the school year, I...
