Who or what inspires you most to keep fighting for a cure, and why?
“I fight for my family. My husband and my four-year-old daughter. She is too young to understand what cancer is and I need her to know that her mother is going to fight to be here for when she graduates from college, on her wedding day, and the day she becomes a mother herself.”
Describe what it feels like to be part of the rare disease community.
“Sometimes it’s scary. As time goes on it gets a little easier, it’s comforting to have found a group that understands what you are going through and is there for you. The first time I posted in the EHE patient support Facebook group about being diagnosed, I was met with many comments and messages from people in the EHE community offering advice and letting me know that I was not alone. It has been 6 months and I still reach out to those in the community when I need help or just someone to talk to. It’s scary but it’s nice to have others that understand.”
How has The EHE Foundation impacted your EHE experience?
“We found The EHE Foundation the day after I was diagnosed and I tell everyone that The EHE Foundation did most of the hard work for me. They connected me with doctors right away. I did not have to guess or make numerous calls to find a specialist who understands this cancer. There is no doctor in my area and the closet specialist is 5 hours away. Without The EHE foundation providing this important information, I do not know how long it would have taken me to find a knowledgeable doctor.”
