Month: October 2023

Makenna is 14 years old and was diagnosed with EHE in June 2022. Makenna shared about her EHE diagnosis, “It has changed my life by showing me that I should be grateful for the things I have in my life. Examples of those would be my family, my friends, just being able to take a […]

“The most difficult part of being diagnosed with EHE and living with it is how much it has changed me and my family. I have been so sick, I have lost so much weight, I barely have any energy, and I experience pain every day. My EHE is only in my liver. My family and […]

Who or what inspires you most to keep fighting for a cure, and why? “My family, friends and support system. As well as all other patients who have been diagnosed with EHE and all those around them. Since EHE is a different path for each patient, and we still don’t understand how it happens/what causes […]

Colin was diagnosed in 2021 with this one-in-a-million cancer. “EHE has changed my life because it has limited some of the sports and activities I can do. Before my diagnosis I had a lot of abdominal pain that impacted the sports I love, but with treatment I am able to keep playing baseball and basketball […]

“EHE has changed every aspect of my life, and surprisingly, a lot of them, for the good. You think of a cancer diagnosis affecting the physical body, which it does. But for me, the most challenging part has been in my mind. Coming to terms with this new unwanted adjective/label, cancer patient, has been surreal. […]