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
Hi Stephanie, So proud of you for creating awareness for rare diseases. Keeping you and family in thoughts and prayers. Keep up the strength. Ben.
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