The forgotten cancer: Jenni Kovach's story of her diagnosis

Jenni Kovach was diagnosed with Epithelioid Hemangioendothelioma on December 2017 at Riverside Hospital. Almost immediately, she was put on a trial chemotherapy drug and later got a liver transplant that increased her life expectancy. Kovach is the director of development for the EHE Foundation, a nonprofit organization working to raise money to help find a cure and support the patients diagnosed with EHE.

“I believe that anything is possible if you put your mind to it. I knew that I could help move EHE research forward and someday be a part of finding a treatment and a cure.”Kovach said.

Epithelioid Hemangioendothelioma, or EHE, is a rare cancer in a group of cancers called sarcomas. It starts in cells lining the inside of blood vessels. The chance of getting this tumor is less than one in a million.

“There is a huge lack of awareness and even a basic understanding of the science of EHE not only with patients but also many medical providers have never seen it! It completely opened my eyes to the critical challenges EHE patients face; some cannot even find a doctor close by for treatment,” Executive director of The EHE Foundation, Medha Deoras-Sutliff said.

Being diagnosed with EHE can be a difficult thing, with limited research and lack of treatments. It’s easy to feel discouraged and helpless.

Kovach said, “I spend as much time as possible with my daughter and my husband. I look at life differently.”

As the director of development, Kovach raises money, which can be difficult since a lot of people don’t even know what EHE is.

“Asking for money is hard, but I know that money drives research,” Kovach said.

The EHE foundation works with many patients, families and friends on providing support. Their website provides a lot of helpful information on what to do after diagnosis, and a way to feel included in their small but powerful community.

“The EHE Community is stronger together and includes patients, their families and friends and the many working tirelessly to find treatments and a cure,” The EHE Foundations states on their website.

Raising money helps the EHE foundation fund research. Donating any amount of money can help. On their website they offer instructions on how one can donate and they show their upcoming fundraising events.

“We do many grassroot fundraising events to raise funds through patients, families and friends,” Kovach said.

In the United States, 20 people are diagnosed with EHE every year. The EHE foundation creates a group to help support the patients. Although it's a rare cancer it’s important to learn about and donate to help find a cure for the forgotten cancer.

Illustration by Athena Heckman

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