Deborah Cunningham, 68 years old, diagnosed 2017 after 20+ years of not knowing what I had. Doctors at Johns Hopkins thought it could be polymyositis. Genetic test removed all doubt and results were in that I have Pompe Disease. I am receiving infusions of trial drug, NeoGAA, at Duke Research Clinic every two weeks. I adore the nurses and it seems to help me feel better afterwards. Please keep researching — genetic therapy is being tested and is on the horizon for some. I find my joy in my three grandsons!
