On Feb 18, 2021 I was diagnosed with Late Onset Pompe Disease (LOPD). I'm a married, 45 year old Mom of 2 young boys (5 and 3) who works full time "outside" the home. (Due to COVID I've been working from home for the last year). It's been a journey of 10+ years (probably closer to 20) to get diagnosed. During that time, my mobility has deteriorated to the point which I recently purchased a shiny red rollator to help me get around when I'm outside of the home.
I am so thankful to finally have a diagnosis and my Neurologist, Dr. Stuart Mendelson, is my hero. I begin ERT on 4/7/2021 and I am grateful that there is a treatment out there than can provide some hope of at least slowing the progression of this disease. And I am thankful for this amazing Pompe community that is there to help me along the way.
Stephanie Levin
Age 45
Randolph, NJ USA
