Anke’s Story: Building Knowledge and Choosing to Just Live
For Anke, the road to an EHE diagnosis began with something deceptively ordinary: a stomach ache.
Her doctor, being extra cautious, ordered an ultrasound. The scan showed shadows on her liver, and what followed were eight long weeks of uncertainty, testing, and waiting. When the pathology report finally came back with the words epithelioid hemangioendothelioma, Anke felt something unexpected alongside the shock: relief.
“I was relieved reading that,” she said, “because before, no one had a clue and no one could share some insights or even hope.”
Having a name for the disease changed everything. It gave Anke a place to begin.
She found the EHE Foundation, read the consensus paper, watched a webinar about sirolimus, and began building the knowledge she needed to move forward. That process did not remove the fear entirely, but it helped her begin to accept what she calls the “new me” and shape a new mindset: Just Live.
“Build knowledge,” Anke says. “It is scary, but building knowledge helps to accept it.”
Today, Anke says she fears less than she did at the beginning. She has had no symptoms and no growth for a year, and living with EHE has changed the way she sees her life. Instead of focusing on expectations or spending her time trying to please others, she is more intentional about enjoying the present and doing what matters to her.
“I now enjoy the today,” she said.
One of the most meaningful moments in her journey came when she decided to compose a song called “Just Live.” She shared the idea on Facebook and invited others in the EHE community to contribute their names—or the names of loved ones no longer here—so they could be part of the song. More than 90 people responded.
“Each time I sing this song, I feel hope,” Anke said. “Feel love, feel a place of belonging.”
That sense of connection has been an important part of her journey. Rare disease can be isolating, but community can bring comfort, understanding, and strength in ways few other things can.
Anke’s story is a reminder that knowledge can be empowering, that connection matters, and that hope can grow even in uncertainty. For her, living with EHE has become not just about enduring the unknown, but about learning to hold life more closely and live it more fully.
Anke is a founding member of Rare Cancer – EHE Deutschland e.V. We are thrilled to welcome a new international EHE advocacy group to the EHE community.
