Lila’s Story: Finding Strength in the Unexpected
Lila’s EHE story began in a way no one could have planned.
Her aunt, an ultrasound technician, was casually scanning her one day when she noticed something unusual on Lila’s liver. What seemed like an offhand moment quickly became something much more serious.
“She instantly found 1-2 spots on my liver that she really wanted me to get evaluated by a doctor,” Lila said.
From there, Lila went through a long series of tests—multiple ultrasounds, a PET scan, MRI, CT scan, and eventually a liver biopsy. That biopsy confirmed that she had epithelioid hemangioendothelioma (EHE) in her liver, and that it had also spread to her lungs.
At the time of diagnosis in 2023, Lila had 31 tumors across her liver and lungs.
“I was very scared when I heard of my diagnosis because there was no cure and I was told I was one in a million,” she said. “I didn’t know what my life would look like after this diagnosis.”
That fear was real, but so was the uncertainty of trying to understand what living with such a rare cancer would actually mean. For Lila, one of the hardest parts has been holding both truths at once: that EHE is scary, and that it has not affected her day-to-day life in the way many people might expect.
“It’s very scary living with EHE,” she said, “but I am very thankful that it does not affect me day to day.”
Since her diagnosis, Lila’s disease has remained stable, and three of her tumors have disappeared. That kind of news does not erase the weight of living with cancer, but it does offer something meaningful: room to keep going, and reason to hope.
Through it all, Lila says her family and friends have carried her.
“My family & friends helped me along the way,” she said. “I couldn’t have done anything without them.”
She also found important support in the EHE Facebook community, especially in the early days after diagnosis, when everything felt new and difficult to understand.
“My biggest support when I was newly diagnosed was the EHE page on Facebook,” Lila said. “They helped me navigate my new life living with cancer.”
That sense of connection matters. One of the most difficult parts of a rare diagnosis is the isolation it can bring, and Lila wants others who are newly diagnosed to know they do not have to face EHE alone.
“Just know you are not alone,” she said. “Reach out to others who are going through the same thing as you.”
Lila’s story is a reminder that EHE does not look the same for everyone. Sometimes it arrives unexpectedly. Sometimes it is found by accident. And sometimes living with it means learning to hold fear and gratitude at the same time. In Lila’s case, it has also meant finding strength in the people around her and in a community that understands what this diagnosis can feel like.
