“I’m always in excruciating pain, but I push forward,” health activist Michele Holbrook tells PEOPLE in this week’s issue
Michelle Holbrook lives with more than 100 tumors hidden inside her body causing agonizing pain daily. The 57-year-old has a rare form of neurofibromatosis, a genetic condition that causes growths to spread all over her nervous system. In this week's issue of PEOPLE, Holbrook opens up about her life with the condition — and how she's running, rowing and raising money for a cure.
Whenever Michele Holbrook boards a plane, she carries a letter from her doctor explaining that despite appearances, she needs special accommodations — a 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, the glares 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 pre- board?’ ” 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.
Holbrook showed no signs of her condition until she was 25 years old and a new mother. Typically the onset of the disorder occurs in early adulthood, and some research indicates that hormonal changes, such as those during pregnancy, can exacerbate the condition. That appears to be the case with Holbrook, who suddenly began having trouble with her leg.
“I’d be walking down the street, and I would just fall down out of nowhere,” she recalls. Scary though it was, she shrugged off her symptoms for a few years. Finally in 1996 she sought out an orthopedic surgeon in Kansas City, where she was living at the time, and he discovered a tumor on her spine. Soon after, a neurosurgeon diagnosed her with neurofibromatosis. “I had never heard of it. I couldn’t even pronounce it.”
She had her first surgery soon after, and since then she’s undergone 75 MRIs and 11 surgeries. During one operation to extract a tumor in her lung, surgeons had to remove two of her ribs. Over the years she’s had 14 tumors taken out, the most recent from her spine last May.
In 2018 she had to undergo 36 radiation treatments to shrink a tumor near her brain stem. “I thought they would remove these tumors, and I’d be okay,” she says. “But just when one is removed, another pops up.”
A few years after her diagnosis, Holbrook divorced and moved with her son Chandler to Amelia Island to be closer to her parents, neither of whom are affected by the disease. Only about 15 percent of those with her form of NF inherited it from a parent. (Her only sibling, her twin brother, hasn’t shown any sign of NF.)
Holbrook met her husband, John, 56, a fellow real estate agent, in Florida. When he learned of her condition “he said, ‘I don’t care what you have. I love you,’ ” she says. “He’s my biggest supporter.”
The couple have been married for 11 years and live with their Boston terriers Ginger and Katie. Like her owner, Katie is prone to tumors and has had several removed. “When the vet first told us about her tumors, she said, ‘Let me tell you what will happen,’ ” Holbrook recalls. “And John looked at her and said, ‘Ma’am, my wife has them all over her body. We know how to handle this.’ ”
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In 2013 she ran her first half-marathon in support of NF and has since run two full marathons and another 19 half-marathons to raise awareness and money for the disease. Every race, she says, is difficult but worth the discomfort. “People don’t understand how I still run or exercise,” she says. “But a body in motion stays in motion. I know how to handle my pain.”
She’s motivated by the children she has met who are living with NF. Some have tumors that have caused blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain and even cancer.
“When you see children born with this, it’s heart-wrenching,” she says. “I’m of the age where I can handle it, but I never want a child to go through what I’ve gone through.”
Although there’s no drug yet available for the disease, Holbrook, who gets most of her treatment in nearby Jacksonville, takes the medication gabapentin for her nerve pain — and tries to train daily to prepare for her fundraising events. Her next big goal is a 365-mile rowing challenge from south Florida to north Florida in the spring. But despite her active lifestyle, she knows there’s a harsh reality that comes with her disease.
“Does NF shorten my lifespan? Of course it does. Living with three brain tumors, you don’t know what will happen. Do I focus on that? Of course not. I can’t spend my time thinking about it.”
On difficult days Holbrook turns to one of her favorite Bible verses, Genesis 50:20: “You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.” It’s the same verse she took comfort in after her son died at 28 from an accidental fentanyl overdose in 2020.
“He had a disease just like I do,” says Holbrook of her son’s struggle with addiction. In his honor she founded Chandler’s Hope, a non-profit that helps clothe the homeless.
“God has brought me to this place for a reason,” she says. “It’s to help children, find a cure and save the lives of many people. I don’t take that lightly.”
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