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 EHE, it is imperative we keep helping each other by sharing our stories, so we can find out why. When we know WHY it happens it will be much easier to find a cure. Since each patient is unique, it may make it more challenging, however, I am positive with each of us patients working together to share our story we will find a cure for our rare disease. I am also inspired by the brilliant doctors and researchers who are always working to help us.”
Describe what it feels like to be part of the rare disease community.
“There are a lot of feelings and emotions around being part of a rare disease community. Some days I feel mad sad and angry because I don’t want to have a rare disease. Some days I feel inspired by others after seeing them fight or get a clean scan. I feel inspired when there is a new treatment available or a new discovery in helping find a cure. Some days I feel happy and positive because I am helping someone newly diagnosed feel that they are not alone. Or I get good news on my scans. I also have recently felt mixed feelings when my son decided to do his final honors Biology project on EHE, and my niece interviewed me on EHE for a school project.”
How has The EHE Foundation impacted your EHE experience?
“Where would I be without The EHE Foundation???? When I was first diagnosed my local doctor told me he never even heard of EHE and he had to Google it himself. To hear that from a doctor was rather shocking. I asked him if it was cancer, and he said it is an ultra-rare form of cancer from what he had learned in the short time of Googling before giving me the news, as he called me right when he got the results. So there really weren’t many places to turn to other than The EHE Foundation. I did a lot of Googling myself that first evening, and the days after learning of my diagnosis. I had my surgery within a few weeks and was able to donate my tissue to the EHE Biobank. This was because of the EHE Foundation, and being able to connect with Dr. Rubin and Dr. Tap within the first couple of days, again because of the resources on The EHE Foundation website. It has also been such a blessing to connect with other patients with EHE since there aren’t any local EHE support groups given how rare it is. They have been a lifeline to me and my family. They make us feel supported and give us so much important information via webinars and conferences. The EHE Foundation helps us always stay up-to-date and feel like even though we are so rare, we matter and are supported, and many people are fighting for us!”
What do you wish people knew about EHE?
“Cancer is very silent to others, but very loud for the individual who is diagnosed. Most people look at me like I am a normal, healthy person, and l know, question, “Is she really sick?!” You can’t see my scar or my constant pains, worry, and stress.
EHE has made me more aware and positive towards people and life in general. I try to be more of a DOER now, only because so many people asked me at my initial diagnosis how they can help, which is a very loaded question. It’s hard to ask for help when being diagnosed is so fresh and a major shock. I now just DO for others, maybe it’s as simple as a smile to a stranger, paying for a meal for someone, dropping kindness off, or just doing my best to see things in a positive perspective, which at times I have to remind myself! I want to show my kids and others that challenges in life can make you stronger and a better person. Notice others, pay attention, ask questions and listen, be selfless, and be kind.
This EHE diagnosis is a part of my life now (as there is no cure), and I chose to make it impact my life as something positive. I hope I can help empower others to fight with positivity and strength. Keep perspective in life and remember everyone has challenges in life, but how you choose to face them will make all the difference. No one can really understand and relate to your situation, so instead of being frustrated or feeling let down, know you are strong…smile and you know you’ve got this.”
~ Aimee Liebert