FERNANDINA BEACH, Fla — (Editor's Note: The video above is from a 2017 interview with Holbrook)
Michele Holbrook started having mobility issues with her left leg in her late 20s.
"I went to an orthopedic surgeon thinking that it was just an old sports injury and the orthopedic surgeon sent me in for an MRI. They performed the MRI. He sent me to a neurosurgeon, and at that time, the neurosurgeon explained to me that I had neurofibromatosis," Holbrook recalled. "I had no clue what neurofibromatosis was. I couldn't even pronounce neurofibromatosis."
Neurofibromatosis (NF) is a group of genetic disorders that causes tumors to grow on nerves throughout the body. Holbrook thought she only had one tumor, but would soon learn there were more, a lot more.
"I probably have over 100 tumors," Holbrook said. "I have three brain tumors. I have tumors all through my spine. I have them in my pelvis area and my shoulders. I've had three removed off my legs, and that's been in the past two years."
Holbrook, now 56, says she has had ten surgeries, thirteen tumors removed, and radiation on her brain stem and spine. Right now, there is no cure. She's on a mission to change that.
This month she was honored in New York City at the Children's Tumor Foundation Gala as the 2023 National NF Ambassador. Holbrook says 80% of the funds that are given to the organization go toward research to help find a cure.
"I really want to find a cure, and not so much for me, but for the children and the young adults," she says. "I have a dear friend of mine; her son is Nicholas. And he's about to go in for another surgery. This summer, he had four brain surgeries. And it's heart-wrenching. He's completely deaf. And that's what happens. Anywhere that there's a nerve ending a tumor can grow."
She's using her voice and her story to raise awareness about the disease that affects 1 in 3,000 births, which is about 2.5 million people worldwide according to the Children's Tumor Foundation.
"A lot of the individuals that have NF1 have all the tumors on the outside of their body. Then you have NF2, and those are internal. Then the Schwannomatosis that I have, we have internal tumors as well. And we have excruciating pain," Holbrook said. "It's not a contagious disease. It's a disease that's heart-wrenching that causes deformities that cause a lot of pain."
It's pain you can't see by looking at her.
"I look normal on the outside, so people look at me and they don't think that there is a problem. They see nothing wrong with me. But the amount of pain that I live in daily, there are some days where it takes everything I have to get out of bed to be able to push for it because of the amount of pain that I'm in," Holbrook said. "I want people to know that. I want people to know that just because we look normal on the outside, there's a lot going on, on the inside."
As ambassador Holbrook will travel across the country to speak about NF. And next fall she plans to row from South Florida to North Florida with a small team on the Take Courage boat to raise awareness for the Children's Tumor Foundation.
"It's about a 365-mile journey and a five-day trip. The back portion is the dumpster, and the front portion is the Ritz Carlton," Holbrook said laughing. "One person sleeps while the other person is rowing for two hours, and then the other two sleep while the other two are rowing for two hours."
It's a journey she hopes will draw attention to a disease that many don't know exists.
"We have to get the word out there,” Holbrook said, "So that's what I want to do in 2023 and beyond. We have to turn this into a positive and find a cure.”