One thing I learned early on following my diagnoses in 2006 is that the Pompe community is full of strong and courageous people with a wealth of knowledge. There were 4 or 5 people that taught me so much in the early days of my journey. I have learned so much along my way from finding the right doctors, how to teach others about Pompe, the right way to advocate and using adapted equipment to make life easier to name just a few. I enjoy spreading this knowledge and hope to others that are newly diagnosed or just having a rough time. I get so much reward for helping others and I've become good friends with many in the community.
I always try to stay positive and find something good in everyday. Even if it's just the warm sun on my face. It makes life so much easier. I love to see new places and travel, especially if it's to a place with a beach. It's become much harder to access these places but I try to always find a way. You would be amazed at how many strangers are willing to help you if you just ask. Life takes a little more planning ahead but it's so worth living life to it's fullest! Just remember to pace yourself along the way.
Onward my warrior friends!
Karen Kacures
Texas, United States
Age 58
