This Woman Has Had 75 MRIs, 11 Surgeries and Has 100 Tumors, Including 3 in Her Brain — Here’s Why (Exclusive)

Michelle Holbrook lives with more than 100 tumors hidden in her body that cause pain every day. The 57-year-old has a rare form of neurofibromatosis, a genetic disease that causes growths to spread throughout her nervous system. In this week’s issue of PEOPLE, Holbrook talks about her life with the condition—and how she runs, rows and raises money for a cure.

Whenever Michele Holbrook boards a plane, she carries a letter from her doctor explaining that, despite her appearance, she needs special accommodations—if possible, a bulkhead seat so she can stretch her legs.

Otherwise, “my knees press into my spine and I feel indescribable pain.”

Michele Holbrook 2023.

Craig Warga for the Children’s Tumor Foundation

But she’s used to the quizzical looks, angry looks and, sometimes, outright hostility she often gets from other passengers.

“Once my wife said to me, ‘Who do you think you are to get advance boarding?’ ” she says. “I look so normal from the outside that people don’t understand.”

However, the inside is a different story. Holbrook’s body is riddled with tumors invading her brain, pressing on her spine and pressing on her lungs – more than a hundred in all.

“Anywhere there’s a nerve ending, one of these tumors can grow,” says Holbrook, 57. “You have nerve endings from the top of your head to the bottom of your toes.”

Fla. Woman with rare genetic disease lives with more than 100 tumors: ‘I have indescribable pain’ (exclusive)

Michele Holbrook’s MRI shows multiple tumors.

Courtesy of Michelle Holdbrook

Her tumors, which are benign but could turn malignant at any time, are caused by a genetic disorder known as neurofibromatosis, or NF. The form of the disease that Holbrook has – Schwannomatosis, characterized by internal and slow-growing tumors – is rare and affects only one in 40,000 people. And it’s painful: “I’m in pain every day.”

But Holbrook, a real estate agent who lives on Amelia Island, Florida, is determined to “turn a negative into a positive,” she says. That woman on the plane? “I don’t hold it 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 limitless supply of energy—she became an outspoken advocate for children affected by the disease and 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 we have of finding a cure,” she says.

Michele Holbrook is training for the 2023 rowing challenge she will take on in the spring to raise funds for the NF.

Courtesy of Michele Holbrook

Holbrook didn’t show signs of her condition until she turned 25 and became a mother. The disorder usually appears in early adulthood, and some research shows that hormonal changes, such as those during pregnancy, can make the condition worse. That seems to be the case with Holbrook, who suddenly started having problems with her leg.

“I would walk down the street and I would just fall out of nowhere,” she recalls. Although it was scary, she avoided her symptoms for several years. Finally, in 1996, she sought out an orthopedist in Kansas City, where she was then living, and he discovered a tumor on her spine. A neurosurgeon soon diagnosed her with neurofibromatosis. “I’ve never heard of it. I couldn’t even say it.”

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Michele Holbrook with orthopedic surgeon Dr. Courtney Sherman.

Courtesy of Michele Holbrook

Soon after, she had her first operation, and since then she has undergone 75 MRIs and 11 surgeries. During one operation to remove a tumor in her lungs, surgeons had to remove two of her ribs. She’s had 14 tumors removed over the years, the last one 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 were going to remove these tumors and I’d be fine,” she says. “But when one is removed, another pops up.”

A few years after her diagnosis, Holbrook divorced and moved to Amelia Island with her son, Chandler, to be closer to her parents, neither of whom were affected by the disease. Only about 15 percent of those with her form of NF inherited it from their parents. (Her only sibling, her twin brother, did not show any signs 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 is my biggest supporter.”

The couple has been married for 11 years and lives 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’s going to happen,'” Holbrook recalls. “And John looked at her and said, ‘Ma’am, my wife has them all over her body. We know how to deal with this.’ ”

Michele Holbrook and her husband John Holbrook.

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In 2013, she ran her first half marathon in support of NF and has since run two full marathons and 19 more half marathons to raise awareness and money for the disease. Every race, he says, is difficult, but worth the discomfort. “People don’t understand how I still run or work out,” she says. “But a body in motion stays in motion. I know how to deal with my pain.”

Michele Holbrook and friends are raising money and awareness by running the 2017 Half Marathon.

Courtesy of Michele Holbrook

She is motivated by the children she met who live with NF. Some have tumors that have caused blindness, deafness, bone abnormalities, disfigurement, learning disabilities, debilitating pain, and even cancer.

“When you see children born with this, it’s heartbreaking,” she says. “I’m at an age where I can handle it, but I don’t want a child to go through what I went through.”

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Michele Holbrook with CJ behind the scenes of the Children’s Tumor Foundation.

Courtesy of Michele Holbrook

While there’s no cure yet for the disease, Holbrook, who gets most of her treatment in nearby Jacksonville, takes the drug gabapentin for nerve pain — and tries to train daily to prepare for her fundraising events. Her next big goal is a 365-mile paddling challenge from South Florida to North Florida in the spring. But despite her active lifestyle, she knows there is a harsh reality that comes with her illness.

“Is NF shortening my life expectancy? Of course there is. Living with three brain tumors, you never know what’s going to happen. Should I focus on that? Of course not. I can’t spend time thinking about it.”

On difficult days, Holbrook turns to one of his 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 comforted herself with after her son died at age 28 of an accidental fentanyl overdose in 2020.

“He had a disease just like me,” Holbrook says of his son’s battle with addiction. In his honor, she founded Chandler’s Hope, a non-profit organization that helps clothe the homeless.

“God brought me to this place for a reason,” she says. “It is to help children, find a cure and save the lives of many people. I don’t take that lightly.”

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