Since my diagnosis in January 2014 I have had my ups and downs, times where I have felt so worried about my future but also moments where, because of my disease, I have realised how strong I can be. For me living with Pompe is about focusing on the present, concentrating on the things I can do and not getting frustrated with what I can no longer do. My legs are my weakest muscle and no matter how frustrating that can be I still go for walks, attend a gym, socialise with friends, attend Military functions where I am standing for 1-2 hours, (no mean feat when you’re legs feel like jelly), keep up with the kids, and clean a house. I am also an advocate for Pompe, especially in New Zealand where we are still fighting to get treatment. I have had the privilege of meeting other Pompe warriors along the way and it always amazes me at how strong everyone is. It is a mental journey as much as a physical one and being able to accept it and move on and enjoy the now is so important. Happy Pompe Day!
Samantha Lenik
Vice President, New Zealand Pompe Network
