“My name is Hannah Kiner. I live in Harrisburg, PA and I am a mommy to a 2 year old little boy. I like doing arts & crafts, dancing, traveling, outdoor adventuring, and spending time with my family. I am a member of the Westshoremen Senior Color Guard, am an Advocate for Mental Health Awareness, and when I am able to I do service work with Hope in Haiti.
I was diagnosed with EHE when I was 27 years old after nearly a decade of being considered a “mystery patient”. When I first found out I had EHE I did not quite know how to react but was relieved to finally have a diagnosis. We were searching for answers for so long that finding out I had cancer didn’t seem to surprise me. It wasn’t until we were told there is no cure or treatment that reality started to hit home.
Having EHE is frustrating because at this point we are basically all experiments. We are told to “wait and watch” but have no idea when or why our health could take a turn for the worse and when it does, there is little to no treatment. There are very few doctors able to help us and every single appointment is a battle with insurance companies for fair coverage. Having EHE is also hard because people don’t understand that I have cancer since I don’t always appear to be unwell. Some also don’t understand or believe that there is no cure.
The EHE Foundation is important to me because it means there will eventually be more knowledge about this rare sarcoma, as well as a standard treatment for everyone. Without raising awareness and funds the doctors and research teams would not be able to continue to move forward and we would lose hope.”
