My Life With 100 Tumors

A RARE AND AGONIZING GENETIC CONDITION CAUSES GROWTHS TO SPREAD ALL OVER HER BODY, BUT HOLBROOK IS FIGHTING FOR A CURE

Whenever Michele Holbrook boards a plane, she carries a letter from her doctor explaining that despite appearances, she needs special accommodations bulkhead seat if possible, so she can stretch out her legs. Otherwise "my knees compress into my spine, and I'm in excruciating pain." But she's used to the questioning stares and, sometimes, outright hostility she often receives from other passengers. “I had a lady say to me one time, 'Who do you think you are that you can preboard?"" she says. "I look so normal on the outside that people don't understand." On the inside, however, it's a different story. Holbrook's body is riddled with tumors that invade her brain, press against her spine and crowd her lungs-more than a hundred in all.

"Anywhere there's a nerve ending, one of these tumors can grow," says Holbrook, 57. "And you have nerve endings from the top of your head to the bottom of your toes." Her tumors, which are benign but could at any point turn malignant, are caused by a genetic disorder known as neurofibromatosis, or NF. The form of the disease that Holbrook has-Schwannomatosis, marked by internal and slow-growing tumors is rare, affecting only one in 40,000 people. And it is torturous: "I'm in pain every day." But Holbrook, a real estate agent who lives on Florida's Amelia Island, is determined to "turn a negative into a positive," she says.

That woman on the plane? "I don't hold that against her. I told her what I had, and it was an opportunity to talk to her about NF. She apologized. So you can't get upset." Driven by her deep faith and a seemingly boundless store of energy she's become an outspoken advocate for children affected by the disease and has helped raise more than $90,000 for the Children's Tumor Foundation and for NF research by running, rowing and organizing events for the cause. "The more awareness we raise, the better chance of us finding a cure," she says.