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Stories of EHE
"The hope, passion, and motivation of those affected by EHE not only helped launch The EHE Foundation, but are also the driving force behind our continued progress. We vow to continue to stand against EHE on behalf of the fighters, survivors, and those taken too soon. This page represents some of our cherished EHE patients, who have willingly shared their story to help spread EHE awareness."
~ Jenni Kovach, President, The EHE Foundation
Amy's Story
Amy is living with progressing epithelioid hemangioendothelioma (EHE). Diagnosed in 2010, she has had a challenging journey, including a liver transplant, removal of lung tumors, and various systemic therapies.
As a champion of our mission she says, “We (patients) are our best shot.”
Michelle's Story
After enduring several challenging years of unexplained and painful symptoms, Michelle was diagnosed with epithelioid hemangioendothelioma (EHE) in January 2024. Tragically, she passed away in August 2024. In this heartfelt video, Michelle's sister, Maura, shares her sister’s story, reflecting on Michelle's selflessness, her patient experience, and the profound impact of life and loss.
Tina's Story
After self-advocating for nearly seven years, Tina was finally diagnosed with epithelioid hemangioendothelioma (EHE) in 2024. Even with the emotional and financial burden of years of misdiagnosis, she remains a beacon of positivity. Diagnosed with the rare YAP-TFE3 gene fusion and facing growing tumors, Tina was offered transarterial chemoembolization (TACE). Usually used to treat liver cancer, this minimally invasive procedure has proven successful for Tina so far!
Cedric's Story
Cedric Gegel is an actor, director, and screenwriter based in the NYC area. Watch our candid conversation recorded live on Facebook, where we talk about his EHE diagnosis, treatment, and the impact his diagnosis has had on his life. There's even a sneak peek of his work!
Lindsey's Story
Very recently diagnosed with epithelioid hemangioendothelioma (EHE) Lindsey is now on a treatment plan of "watch and wait" also known as active surveillance. She talks about the support she has received from her community and the responsibility she feels to spread awareness and advocate for people living with EHE and those who will be diagnosed in the future.
Kali's Story
Kali's EHE journey began as a story of self-advocacy. She described her persistent symptoms to her gynecologist over the course of several years before insisting a specialist take a closer look during a planned hysterectomy. Pathology revealed the surprising diagnosis of EHE.
Cecilia's Story
Cecilia was diagnosed in 2024 with epithelioid hemangioendothelioma (EHE) after experiencing recurring bouts of extreme pain leading to a liver biopsy. Today, she carefully monitors her disease with active surveillance or "watch and wait."
Michaela's Story
Michaela's EHE story began with a misdiagnosis and surgery in 2008. With her diagnosis corrected to EHE in 2009, Michaela started a long process of additional surgeries, treatments, and medical complications. Throughout it all, she remained positive and today, she celebrates more than 15 years of living with EHE. Read Michaela's full story.
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EHE Patients: Thinking about sharing your story?
Your EHE story has the power to inspire, inform, and make a difference. By sharing your journey, you can help raise awareness for this rare cancer, connect with others facing similar challenges, and shine a light on the urgent need for research and treatments.
Together, we can amplify the voice of the EHE community and drive change. Share your story and help us spread awareness. Your voice matters!