Fla. Woman with Rare Genetic Condition Lives with More Than 100 Tumors: 'I'm in Excruciating Pain' (Exclusive)

"When one tumor is removed, it's like another pops up," says Michele Holbrook, who is raising awareness of neurofibromatosis for the Children's Tumor Foundation

Michele Holbrook's leg had been giving her trouble. “I’d be walking down the street and would just fall down out of nowhere,” says Holbrook, who was 25 at the time.

She 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 internal painful and slow-growing schwannomas (tumors made up of Schwann cells that cover the cranial, spinal, and peripheral nerves, and in some cases meningiomas of the brain and spinal cord).

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

"I thought they would remove these tumors and I would be okay, but it progressed through the years,” she says.

New tumors appear randomly; at last count she had more than 100. “I am in excruciating pain every day," she says of the tumors, which have grown throughout her body, including on her spine, legs and "that close" to her brain stem. "Of course it concerns you."

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

She remembers John accepting her wholeheartedly when they first met, even after he learned about her NF. “He said, ‘I don't care what you have. I love you. We're in this journey together,'" she recalls.

And so, together they learned everything they could about her condition.

“Anywhere that there's a nerve ending, you can have a tumor,” Holbrook explains. “The tumors can shrink and grow, and just when one is removed, it seems like another pops up — there is no rhyme or reason.”

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

"One of my goals is to turn my negative into a positive, because the more awareness we raise, the better chance of us finding a cure, or having those funds for research," says Holbrook, who was named 2023 ambassador for the Children’s Tumor Foundation (CTF).

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

“I'm of the age where I can handle this, but when you see the young children that are born with this and have to live through this, it's heart-wrenching,” Holbrook says.

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Although Holbrook's tumors are benign for now, they have a chance of becoming malignant, so she gets scans every six months to a year.

She also tries 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 that 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 am in pain every day and most days I just push through," she says. "All of us that have NF are fighters.” In fact, Holbrook says she's most often seen in a t-shirt that reads "Born a Fighter" with the letters NF highlighted.

Through it all, Holbrook remains committed to raising awareness about NF and the important work of the Children's Tumor Foundation. “It's not about me — it's about the younger generation that has this horrendous disease," she says.

“I never want a child to go through what I've gone through."

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