What do you want others to know about EHE?
“EHE is incredibly rare and I’ve never even learned how to say it or spell it! I was diagnosed over 5 years ago and had active chemo treatment during 2017 and 2021. I was incredibly blessed to live in a capital city with a lead EHE researcher on hand and received the most incredible treatment – medical and personal. One of the most helpful things the team told me when I first met them, was that this is an incredibly rare disease, and even within EHE, each person’s disease will be unique. This isn’t like some of the major cancers that have established diagnosis, treatment, and outcome protocols, and I don’t have to pay too much attention to the many, well-meaning but completely irrelevant cancer stories I will hear from others. Sharing news of a diagnosis and treatment is scary enough for the people directly involved, it’s also scary and uncomfortable for the people we have to share it with. They don’t know what to say, and that’s OK. They often reach for the positive example they have of someone being ‘cured’ of a completely different cancer. Once I learned to accept their kindness and reject the specifics, I found those conversations much less upsetting and was able to move on and concentrate on what was most important right then and there.”
~ Sherri Laurie
