There comes a time in the course of growing up when you are confronted with irrefutable evidence that you are simply not like everyone else. For Jenica Chekouras, this first happened when she was six, an only child growing up on a farm in northern Wisconsin, her body freckled with what Jenica now calls "weird moles." Her mother took her to a physician who made the diagnosis that Jenica suffered from Gorlin syndrome, also known as basal cell nevus syndrome, or BCNS, a rare genetic disorder marked by proliferating skin cancers.
Similar tumors occur in the most common kind of cancer, basal cell carcinoma, which affects more than 750,000 Americans. But while many people will someday get one or two tumors of this type, usually caused by too much exposure to the sun, Jenica's body was covered with them.
"The doctors said, 'You have over 200 carcinomas,'" recalls Jenica, who is now 21. "They said, 'What do you want to do with them?' I said, 'I want to take them all off; toss them in the furnace and burn them.' I didn't want to deal with them as a 6-year-old. But the doctors made sure I was well aware that I was going to have to make decisions that most kids don't have to make."
At first Jenica believed her life would not change much. But when she told her first-grade classmates about the disease, "their parents said, 'Don't play with her. Don't have anything to do with her,'" she recalls. "I remember the rather somber day I sat down and counted how many friends I started out with and how many I had left. The first number was 48, the second number was 6."
Over the years that followed, her physicians took to surgically removing Jenica's carcinomas, a few at a time. But there was a futility to what Jenica calls "the classic surgery: scalpel, sutures, the whole nine yards." She hated more than anything having the stitches removed. Then the surgery would leave scars, and the tumors would grow back in any case. And then there were the jaw cysts, another common manifestation of BCNS, which form around baby teeth and, in Jenica's case, grew as large as Ping-Pong balls. The surgeons took those out, along with three of Jenica's teeth and a good portion of her jawbone. But Jenica persevered. She can deal with the disease, she says, and if other people can't, that is their problem. "Yes, I have it," she says. "If you don't like it, there's the door, be my guest."
Now Jenica Chekouras is a senior at the University of Wisconsin-Madison, thinking about going into a career in law unless, of course, she ever finishes that novel she's been working on. Anyone seeing her walk down the street would probably never know she was different. She's a tall, slender woman with an engaging smile, and only a close look might reveal a few spots on her face that look like moles. She's got a boyfriend and not enough time in a busy schedule to visit her doctors. Her dream is to travel around the world and die comfortably in her house when she's 102.
While there is still no real treatment for Jenica's disease, she has played a vital role in solving a remarkable medical mystery. Her contribution has given scientists a new understanding of the genetic basis of basal cell carcinomaas well as BCNSand may someday lead to a cure for both.
Gary A. Taubes
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Jenica Chekouras, who helped solve a medical mystery, takes a break on the lawn of the University of Wisconsin campus.
Photo: Kay Chernush