I have more than a HUNDRED tumors in my body. But I’m still fighting
A Florida woman who has more than 100 tumors in her body is still battling 30 years later.
Michele Holbrook, 56, has a rare condition that causes her body to grow small masses along nerves and into the skull, causing debilitating pain.
“There are days when if you talk on a scale of 1 to 10 it’s a 15,” Ms Holbrook told DailyMail.com
“It feels like I have electrical cords wrapped around me that are just really tight, sticking into me. It’s a constant pain.’
She was diagnosed at the age of 25 with schwannomatosis, which affects less than one in a million people and has made everyday life a constant struggle.
Mrs. Holbrook has had to hang up her running shoes due to excruciating pain. She first noticed symptoms in her leg that interfered with her active lifestyle. ‘I was always active. I think I walked circles around my parents. And then I started having mobility problems with my left leg,” she said.
The avid runner, who comes from Fernandina Beach, even had to hang up her running shoes.
Ms. Holbrook told DailyMail.com that there are more than 100 tumors in her body, mainly in the brain, pelvic region and spine.
“Imagine waking up every day and knowing you have three brain tumors, and that’s me,” Ms Holbrook told DailyMail.com.
She said she first knew something was wrong when she had mobility issues in her left leg. Being a runner and very active it was a cause for concern.
‘I was always active. I was very active as a child in more ways than one. I think I walked circles around my parents. And then I started having mobility problems with my left leg,” said Ms Holbrook.
She consulted three doctors before seeing an orthopedic surgeon, who found a tumor in the lower part of her spine.
A neurosurgeon then diagnosed her with schwannomatosis when her only son was just a toddler.
“There are days when if you talk on a scale of 1 to 10, it’s a 15,” Ms Holbrook said. “It feels like I have electrical cords wrapped around me that are just really tight, sticking into me. It’s a constant pain.’
Ms. Holbrook’s tumors are mainly concentrated in the brain, pelvic area and spine, although they are growing all over her body. “Imagine waking up every day and knowing you have three brain tumors, and that’s me,” Ms Holbrook said.
Ms Holbrook said a challenge with schwannomatosis is that unlike other tumour-related conditions, such as cancer, the treatments are limited and there is no chance of eliminating the condition. “We’re not in remission, and that’s heartbreaking.”
“I couldn’t even pronounce it,” Mrs. Holbrook said.
Schwannomatosis is a rare genetic disorder that results in multiple tumors called schwannomas growing on the peripheral nerves in the body.
The tumors are composed of Schwann cells, which create myelin, the protective covering around other cells. Schwann cells are essential for the development and function of peripheral nerves.
Ms. Holbrook is an ambassador with the Children’s Tumor Foundation, where she works to raise awareness of the condition, particularly in children and young adults. “I want to make this about all of us fighters who are suffering. That’s what matters, and I’m willing to go the extra mile to fight for them,” said Ms Holbrook.
In May Ms Holbrook will have her 11th surgery to remove a tumor pressing on her spine, as pictured here
They produce an excess of myelin that allows electrical impulses to be passed along the nerves.
Tumors can appear anywhere in the body, which affects how symptoms manifest.
For example, tumors that press on the spinal cord can cause numbness, tingling, or weakness.
However, a tumor pressing on the bladder would cause difficulty urinating and a tumor in the brain could cause headaches.
The condition can cause debilitating pain and neurological dysfunction.
The pain usually occurs when the growth presses on a nerve or other tissue.
“I’m in excruciating pain every day,” said Ms. Holbrook.
Ms. Holbrook does her best to manage the pain through exercise, especially running. Lately, however, she’s had to hang up her running shoes, at least until after her last surgery.
In all, she’s had 10 surgeries to remove 13 tumors — with an 11th scheduled for May. This removes a tumor from her spine.
About 15 percent of people with schwannomatosis inherit it, according to Dr Johns Hopkins University.
The disease is a type neurofibromatosis, a genetic disorder of the nervous system that causes tumors to grow on nerves. It affects one in 3,000 people.
Schwannomatosis usually first manifests between the ages of 20 and 40, although symptoms can appear at any age.
However, not everyone with the condition develops more than 100 tumors. Some only have a small handful.
Although schwannomatosis itself is not cancer, there is a chance that a schwannoma can turn into a malignant nerve sheath tumor.
“With neurofibromatosis, it doesn’t have to be malignant to worry about,” said Ms Holbrook.
There is no cure for the condition, although it can be treated with imaging, pain management, and surgery if necessary.
Johns Hopkins estimates that tumors do not recur after successful surgery in 95 percent of cases.
Ms Holbrook said a challenge with schwannomatosis is that unlike other tumour-related conditions, such as cancer, the treatments are limited and there is no chance of eliminating the condition. “We don’t have a waiver, and that’s what’s heartbreaking.”
Research on schwannomatosis is limited.
Holbrook said if patients with schwannomatosis and other forms of neurofibromatosis participate in clinical trials and other research opportunities, it could open the door to more treatments.
“There’s no cure for the disease we have, so I’m on a mission to raise as much awareness as possible to find the cure,” Holbrook said. However, the cure is not for her. Her focus is on children.
In 2022, Ms. Holbrook was named an ambassador for the Children’s Tumor Foundation, where she works to spread awareness of schwannomatosis to help children and young adults living with it.
“It’s not about me, and I don’t want this to be about me. I want to make this about all of us who are warriors who are suffering, all family members who have children or loved ones who are suffering. That’s what matters, and I’m willing to go the extra mile to fight for them,” Holbrook said.