Between the Lines

With columnist Anna Marie Lux.

Woman wants to teach others about rare cancer

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Anna Marie Lux
Sunday, May 7, 2017

JANESVILLE—Twenty-seven-year-old Emily Leifer has experienced more surgeries than most people her age.

On her birthday in 2013, she had brain surgery to remove a tumor and a cyst.

Doctors took out part of her skull at the base of her neck.

“Luckily, it was superficial,” Leifer said. “The surgery and recovery went well.”

During the past four years, she has had laser surgery and localized freezing to treat two tumors in each eye.

The Janesville woman also has developed cysts in her pancreas.

Leifer suffers from a form of cancer known as Von Hippel-Lindau or VHL, a genetic condition characterized by tumors in up to 10 areas of the body.

“When the VHL gene is mutated like mine, the body can randomly create cysts and tumors in the eyes, brain, spine and visceral organs,” Leifer said. “At times, there is even a potential for tumors to turn malignant.”

Leifer wants to teach people about VHL, not because she has the disease, but because the gene involved in VHL is also involved in other, more common cancers.

If scientists can figure out why the VHL gene mutates, they might be able to unravel the mysteries of other cancers, she said.

“Research done on the VHL gene has led to multiple chemotherapies used for kidney and breast cancers,” said Ilene Sussman, executive director of the VHL Alliance in Boston.

“We are learning more and more all the time,” she said.

Scientists have learned that the VHL gene controls the expression of other genes in the body. Some of those genes affect inflammation, which might be a contributing factor to tumor growth in all cancers, according to the VHL website.

No cure is yet available, but research has led to a better quality of life for people with VHL.

To raise awareness, Leifer is planning a bowling fundraiser in Madison on Saturday, May 13, and a 5K fundraiser in September to raise money for the VHL Alliance.

“There are so many fundraisers out there already, and they are all important,” Leifer said. “But I would like to see VHL fundraisers widely attended because they benefit everyone. I want to do my part to find a cure for cancer.”

She was diagnosed with VHL in 2013 when she was genetically tested for the disease.

Her late father also had the illness.

“My mom suggested it could be VHL, which is hereditary,” Leifer said. “Doctors were leery because the disease is rare.”

She and others with VHL must be vigilant about possible tumors.

Most are benign but can become malignant and spread to other parts of the body, which is why monitoring, early detection and treatment are so important.

Leifer is co-chairwoman of the VHL Alliance-Wisconsin Chapter. The group helps coordinate community education and raises money for research.

In the past year, Leifer has gotten married, bought a new house and was hired for a new job. She is a funeral director and embalmer in Janesville.

“In my job, I see death every day,” she said. “I realize things could be worse. My profession helps me appreciate every day.”

Anna Marie Lux is a Sunday columnist for The Gazette. Call her with ideas or comments at 608-755-8264, or email amarielux@gazettextra.com.

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