Lynn is very unique in that she was inflicted with late onset Pompe, was undiagnosed for many years and yet managed to continue to live independently. She raised a family and was able to work for over 30 years in a nursing home environment. Throughout this time she cared for others less fortunate than herself, consistently adapting her work duties and lifestyle to accommodate her declining condition. Her current treatment plan of biweekly infusions has given Lynn a new lease on life. She has since retired, continues to live in her home and has a wonderful support system of family, friends and the Pompe community.
Lynn finally sees herself as “fitting in”, there are others “just like her” and she is not “different” anymore. She takes pride in her lifetime accomplishments and continues to focus on maintaining/improving her heath and to educate family, friends and medical staff about Pompe. The Pompe Community has been wonderful to embrace and support Lynn and our family; her online Pompe family provides her the support that we cannot, and we are very grateful for that. Thank you CAP for all that you do for Pompe and our families.
Signs & Symptoms
Lynn’s physical signs began with the weakening of her leg and mid section muscles which progressively worsened over a 30 year period. Like many patients, Lynn was misdiagnosed and was left untreated during this period of time. It wasn’t until her lung muscles were attacked that a proper diagnosis was uncovered and a treatment plan of infusions began.
Symptoms started at 33
Diagnosed at 58
“To my family and friends……. thank you for being there for me. And I am grateful for you!”