Fla. Woman with rare genetic condition lives with more than 100 cancers: ‘I suffer from excruciating pain’ (exclusive)

“When one tumor is removed, it’s like another one grows,” says Michele Holbrook, who is raising awareness on neurofibromatosis for the Children’s Tumor Foundation

<p>Craig Warga for kids” src=”https://s.yimg.com/ny/api/res/1.2/YbVqu6oo989oaS7LIxyXvA–/YXBwaWQ9aGlnaGxhbmRlcjt3PTk2MDtoPTY0MA–/https://media.zenfs.com/en/people_218/47875ea012c5d0aff677edc5dac0d8db”/><noscript><img alt=Craig Warga for kids” src=”https://s.yimg.com/ny/api/res/1.2/YbVqu6oo989oaS7LIxyXvA–/YXBwaWQ9aGlnaGxhbmRlcjt3PTk2MDtoPTY0MA–/https://media.zenfs.com/en/people_218/47875ea012c5d0aff677edc5dac0d8db” class=”caas-img”/>

Craig Warga for the Children’s Cancer Foundation; Courtesy of Michelle Holdbrook

Michele Holbrook’s leg had been giving her trouble. I was walking down the street and fell out of nowhere, says Holbrook, who was 25 at the time.

He shrugged it off for a few years, but the mobility issues returned, prompting her to seek out an orthopedic surgeon in Kansas City.

He found a tumor in my L4 and L5 [spinal discs] and sent me to a neurosurgeon, who told me I had neurofibromatosis, Holbrook, now 57, tells PEOPLE exclusively. I had never heard of it.

Neurofibromatosis, or NF, refers to a rare genetic condition that causes uncontrollable tumors affecting the brain, spinal cord and nerves. It’s actually a group of three disorders, and Holbrook has Schwannomatosis, which involves slow-growing, painful internal schwannomas (tumors made up of Schwann cells that line the cranial, spinal, and peripheral nerves, and in some cases meningiomas of the brain and spinal cord spinal). rope).

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Since her life-changing diagnosis, Holbrook has undergone 10 surgeries to remove 13 tumors, 36 radiation treatments, 75 MRI scans, and 11 CT scans. One of her tumors was in her right lung, she had two ribs removed to treat it.

“I thought they were going to remove these tumors and I’d be fine, but it’s progressed over the years,” she says.

New tumors appear randomly; at last count it was over 100. I’m in excruciating pain every day,” she says of the tumors, which have grown all over her body, including her spine, legs and “the one near” her brainstem. “Of course it concerns you”.

<p>Craig Warga for Children’s Tumor Foundation</p>
<p> Michele Holbrook” src=”https://s.yimg.com/ny/api/res/1.2/CGNLW6XWIOnWbZrw_epmMg–/YXBwaWQ9aGlnaGxhbmRlcjt3PTY0MDtoPTk2MA–/https://media.zenfs.com/en/people_218/31d1cec8a404960f05801277a6233e0f”/><noscript><img alt=Craig Warga for Children’s Tumor Foundation

Michele Holbrook” src=”https://s.yimg.com/ny/api/res/1.2/CGNLW6XWIOnWbZrw_epmMg–/YXBwaWQ9aGlnaGxhbmRlcjt3PTY0MDtoPTk2MA–/https://media.zenfs.com/en/people_218/31d1cec8a404960f05801277a6233e0f” class=”caas-img”/>

Craig Warga for the Children’s Cancer Foundation

Michael Holbrook

A few years after her diagnosis, she decided to move closer to her parents in Amelia Island, Florida for support. She now she lives there with her husband of 10 years, John Holbrook, 56.

She recalls that John wholeheartedly accepted her when they first met, even after he learned of her NF. She said, I don’t care what you have. I love you. We’re on this journey together,'” she recalls.

And so, together they learned all they could about his condition.

Wherever there’s a nerve ending, you can have a tumor, Holbrook explains. Tumors can shrink and grow, and just when one is removed, another seems to emerge, there’s no reason or rhyme.

But she refuses to let the disease get the better of her.

“One of my goals is to turn my negative into a positive, because the more awareness we raise, the better chance we have of finding a cure or getting those research funds,” says Holbrook, who was named the 2023 ambassador for the children’s cancer. Foundation (CTF).

Children with NF can have tumors that cause blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain, and even cancer.

I’m at an age where I can handle it, but when you see little kids being born with this and having to survive this, it’s heartbreaking, says Holbrook.

<p>Courtesy of Michelle Holdbrook</p>
<p> An X-ray of Michele Holbrook’s spine shows tumors caused by neurofibromatosis.” src=”https://s.yimg.com/ny/api/res/1.2/eyaZdZ_rd25jtzbsPeaD0A–/YXBwaWQ9aGlnaGxhbmRlcjt3PTQyMDtoPTY0NA–/https://media.zenfs.com/en/people_218/2a3a03566c7c077d8533206005f1bf83″/><noscript><img alt=Courtesy of Michelle Holdbrook

An X-ray of Michele Holbrook’s spine shows tumors caused by neurofibromatosis.” src=”https://s.yimg.com/ny/api/res/1.2/eyaZdZ_rd25jtzbsPeaD0A–/YXBwaWQ9aGlnaGxhbmRlcjt3PTQyMDtoPTY0NA–/https://media.zenfs.com/en/people_218/2a3a03566c7c077d8533206005f1bf83″ class=”caas-img”/>

Courtesy of Michelle Holdbrook

An X-ray of Michele Holbrook’s spine shows tumors caused by neurofibromatosis.

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While Holbrook’s tumors are benign for now, they have a chance of turning malignant, so he gets scans every six months to a year.

Also try to stay healthy and active by running and strength training. The body in motion stays in motion, she says, adding that she runs half marathons and participates in other sports to raise money for NF awareness.

Holbrook admits it may seem counterintuitive for her to be so active given her physical discomfort, but that it’s part of her survival. John and I both know when I need rest due to extreme pain, and I will take the time to rest,” she says.

“I suffer every day and most days I just get over it,” she says. “All of us who have NF are fighters. In fact, Holbrook says she is most often seen in a “Born a Fighter” T-shirt with the letters NF highlighted.

Through it all, Holbrook remains committed to raising awareness of NF and the important work of the Children’s Cancer Foundation. It’s not about me, it’s about the younger generation that has this terrible disease,” he says.

I never want a child to go through what I went through.”

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Read the original article in People.

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