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Ohio Woman Fights Tumor Disease VHL

by Trish Doller, Sandusky Register, June 10, 2002

When Cari P. was in labor last October, her blood pressure spiked repeatedly. After giving birth to her daughter, it was discovered Cari had a large tumor in her stomach.

The tumor was the result of Von Hippel-Lindau Syndrome, a genetic condition caused by a dominant gene that leads to an abnormal growth of blood vessels in some parts of the body. Most VHL tumors are benign, but they can be malignant.

In addition to the tumor in her stomach, Cari has also had a brain tumor removed. She said more tumors are possible because of the nature of VHL.

Cari P. holds her daughter, Siera, who is nine months old. Cari was diagnosed last year with Von Hippel-Lindau Syndrome. She and her family and friends are hosting a benefit June 17, 2002.

Cari, a Huron native who works as an administrative assistant at Erie MetroParks, said the disease is generally not life-threatening, but she will likely develop more tumors.

"The key to living with this is early detection," she said. "I will have to go through yearly (CT) scans."

Cari, 27, said she believes she inherited VHL from her mother, who died from a brain tumor in 1982, and there is a 50 percent chance her daughter, Siera, has inherited the disease.

"We're going through genetic counseling at the Cleveland Clinic to see if my daughter has this disease," she said. "It was once considered rare, but it's not so rare anymore. There are thousands of people with undiagnosed tumors."

According to the VHL Family Alliance Web site, the disorder is more common than previously thought because of the use of more sophisticated imaging techniques, such as Magnetic Resonance Imaging. MRI is used to produce high quality images of the inside of the human body.

"(VHL is) one of many recently recognized and described genetic diseases that predispose people to cancer," said Dr. Steve Roshon of North Coast Cancer Center of Sandusky. "It's fairly rare, but the scientific interest is huge, especially among those who are in genetic research."

Cari, her family and friends are planning a benefit to raise money for research on the disease.

"Research is confident that there will one day be a pill which will suppress tumor growth," she said. "We're trying to raise $10,000. The money will go to the VHL Family Alliance."

VHL Family Alliance, Brookline, Mass., is a non-profit organization, dedicated to the diagnosis, treatment and quality of life for people affected by VHL.

The benefit will be noon to 9 p.m. June 19 at D.J.'s Sports Bar, 1643 Cleveland Road, Sandusky, 419-621-8036.

Area bands will donate their time, including TwoTheMax, Funk 'n Bluez, Dave James, Pete Bernel, Island Fever, Daisy Chain, Surrender Dorothy and Donny G. In addition, Greg Michaels of WNRR 92.1 will broadcast live throughout the day.

Area businesses have donated door prizes, including Cleveland Indians tickets, Island Rocket tickets and 18 holes of golf for two with a cart from Sawmill Creek.

The $10 admission includes entertainment, food and participation in a poker run, with a cash prize of $150 for first place.

[Event has passed.] -- see Cari's billboard

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