100 tumors can't stop Fernandina woman's campaign for neurofibromatosis cure

Michele Holbrook was 25 and the mother of a newborn when the mysterious pain and mobility issues began.

After a long series of medical exams and tests, she was diagnosed five years later with a type of neurofibromatosis called schwannomatosis, a rare genetic condition that causes usually benign tumors to grow on cranial, spine and peripheral nerves. The other two forms of neurofibromatosis are typically diagnosed in childhood, while schwannomatosis is usually in young adulthood.

"I was concerned and scared," Holbrook said. "I did not know what the outcome of my condition was. Many thoughts run through your mind, especially when you have a young child."

Now 56, the Fernandina Beach woman has undergone 11 surgeries and the removal of 13 tumors. She currently has about 100 internal tumors and, as a result, surgery is always in her future: The 12th surgery and the 14th tumor removal is scheduled for May 1.

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Before and after: Jacksonville woman has 104-pound tumor removed

"I am in daily pain. Some days are worse than others and during those times I have to sit, which is very hard for me," said Holbrook, who is also still trying to cope with the 2020 death of her son Chandler at age 32. "Nights are difficult because of lack of sleep from the tumors causing pain in my body and legs."

Still, Holbrook maintains a career as a real estate agent and advocates for other people with neurofibromatosis, or NF. She is the 2023 NF Ambassador for the New York-based Children's Tumor Foundation, which funds NF research, education, advocacy and patient care. May is NF Awareness Month.

No cure has been found, yet

Ambassadors are selected to "recognize their courage living with the disorder, their personal efforts to further the foundation goals," according to the foundation.

"This role is very important to me and one I could do the rest of my life," Holbrook said. "… Part of being the ambassador is walking alongside those living with NF and their families, especially the younger generation. I want to encourage them and love them while they are going through the difficult times and fight hard to raise awareness to find a cure. I want to educate others about NF and ways they can help with awareness."

The foundation is "laser-focused on ending" neurofibromatosis, President Annette Bakker said.

"We have a drug approved and more science ready to be translated into treatment options," she said. "It’s an exciting time to be in science and it’s a promising time for NF patients and families, who see real hope and solutions coming."

Holbrook has become a fount of knowledge about neurofibromatosis and uses every opportunity to spread the word.

"I had never heard of neurofibromatosis or schwannomatosis, much less knew how to pronounce it, before being diagnosed," she said. "It causes tumors to grow on nerves throughout the body and can lead to deafness, blindness, disfigurement, bone abnormalities, learning disabilities, disabling pain and cancer."

About 120 children are born with the disease each day, she said.

Neurofibromatosis "occurs in all populations equally and there is not yet a cure. Every person with NF is different, which makes it difficult to find a cure," Holbrook said. "Many of us do not show any signs on the outside, but on the inside are covered with tumors … You live with a disability, but look normal. Surgery is the number-one treatment."

Her family — husband John Holbrook, her twin brother, two grandchildren and parents Pat and Harry Gibbs —supports her public-awareness efforts and are close at hand for her hospital stays.

"We are a very close family and both my mom and dad have always been by my side for every surgery," she said.

Her summer plans include rowing 300+ miles

Despite her hidden pain, Holbrook typically begins her day by exercising, either strength training or running. But running is out for the time being because of the tumor soon to be removed from her spine.

"I have fallen twice within the last month, so surgery is scheduled," she said. "It is frustrating when you cannot do what you love, but I will continue to push through for the younger generation and their families struggling with NF."

This summer Holbrook even plans to row about 365 miles, from South Florida to North Florida, to raise awareness about the foundation and its work. She will be accompanied by "dear friend" Paul Lore, also of Fernandina Beach, who is an experienced ocean rower.

Lore was part of a Talisker Whisky Atlantic Challenge team that rowed across the Atlantic in late 2022 and early 2023 in a charity race. In June he will be part of Team Ohana, which will row across the Pacific from California to Hawaii to benefit the foundation. Then he and Holbrook will take their journey.

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Holbrook also encourages anyone who was diagnosed with the disease to sign up with the NF registry, a secure website that is a "patient-driven resource for accelerating research," such as participating in drug trials, she said. Registration involves taking a survey about symptoms and experiences; a legal guardian or caretaker can fill out the form for patients younger than 18.

"I am very passionate for the children living with NF," Holdbrook said. "Being the NF ambassador is not about me, it is about them and I want to fight for them."

bcravey@jacksonville.com, (904) 359-4109

CHILDREN'S TUMOR FOUNDATION

To donate or get more information, go to ctf.org. To sign up for the NF Registry or show a friend or loved one with the disease how to do so, go to ctf.org/understanding-nf/nf-registry. To donate or get more information about Team Ohana and its fundraising for the foundation, go to ohana2023.com.

This article originally appeared on Florida Times-Union: Fernandina woman with 100 tumors campaigns for neurofibromatosis cure