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AMELIA ISLAND, Fla. – An Amelia Island woman diagnosed with a debilitating disease is using her struggles to help others.
Michelle Holbrook was diagnosed with Schwannomatosis, a type of neurofibromatosis also known as “NF,” at the age of 30. The disease causes tumors to develop throughout her body and she said she had dozens.
But despite the pain she goes through each morning, she is now serving as an Ambassador for the Children’s Tumor Foundation and wants to educate others about the rare disease.
“I am in pain daily,” Holbrook told News4JAX. “But on the outside, you look at me and you think that I am normal. That’s not the case.”
Holbrook said the disease started with pain in her leg — and after numerous tests — that pain turned out to be so much more.
“I was scared,” she said. “I had a five-year-old son at the time. I lived away from my family. I didn’t know what that diagnosis entailed.”
Over the years the tumors multiplied.
“I have probably over 100 tumors in my body. There on my spinal column. I have three brain tumors, I have them in my pelvis area. Anywhere where there’s a nerve ending, you can have a tumor.”
Holbrook has had 10 surgeries and 13 tumor removals but isn’t letting NF bring her down.
She was recently named the 2023 NF Ambassador by the Children’s Tumor Foundation.
The foundation said within this role Holbrook will give both children and adults hope.
“Michele is living a long [life,] but has some challenges in her health,” Simon Vukelj, with The Children’s Tumor Foundation, said. “She’s helping us to help other patients.”
Holbrook told News4JAX she goes on runs to raise awareness and is planning to row 365 miles from south Florida to north Florida for the cause.
“You look at all the children that are going through this disease, that sometimes have it so much harder than me,” Holbrook said. “But I will tell you what. I will fight hard for every single one of these individuals.”
Holbrook eventually wants to bring her fight for a cure before Congress.
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