I've got more than 100 tumors in my body. They are benign and caused by a rare genetic disorder.

• Michele Holbrook has a rare genetic condition that causes tumors to form in her body.
• She's an ambassador for a foundation that helps children with the same disorder.

This as-told-to essay is based on a conversation with Michele Holbrook. It has been edited for length and clarity.

Last month, during one of my regular MRIs, I asked the radiation oncologist how many tumors there were in my body.

She said, "Michele, there are too many to count." I asked if there were more than 100. She said yes.

The tumors, which are benign, are everywhere. A total of 13 have been removed. Most of the others are on my spine, shoulders, abdomen, and pelvis.

I was diagnosed with schwannomatosis, a rare genetic condition that causes tumors to grow throughout your entire body, after having my son, Chandler, 30 years ago, at 25.

I'd been very active and athletic, but I started to have mobility issues. My left leg would go out from underneath me, and I'd fall to the ground. I'd be in excruciating pain.

I feared the tumor could be malignant — and I thought about my young son

Nobody could figure out the cause. I consulted three doctors who thought it was an old sports injury. I played basketball in high school and got knocked around pretty often.

Finally, an orthopedic surgeon requested an MRI. They found a tumor on the lower section of my spine.

I was very frightened when I was told that I needed surgery. Chandler was 3 and in preschool at the time. I thought "What if the tumor is malignant? What's going to happen next?" and "I have a young child."

It was a long couple of weeks before I saw a neurosurgeon. He suspected I had a condition called neurofibromatosis, of which schwannomatosis is a type. He said that it caused tumors along the nerve cells and that, though they were benign, they could cause significant damage to my spinal cord and internal organs such as my liver.

I'd never heard of the condition and couldn't even pronounce it. We didn't know what the outcome would be, but I went into surgery. They did a pathology test on the tumor on my spine that confirmed the doctor's suspicions. Since then I've had 10 operations to remove the worst of the tumors.

Nobody had said it was life-threatening. The neurosurgeon said that people live with this and that we'd have to keep an eye on it. He said I'd need regular scans so the doctors could take the necessary precautions to make sure I was healthy.

It's known as a disorder, but to me it's a disease. I'm living with it every single day of my life, and there's no cure. I don't know for sure, but I think it stayed dormant in my body until after Chandler was born.

The pain can sometimes be excruciating

At one stage doctors did a chest X-ray and found a large tumor that was wrapped around my lungs. I was getting breathless. They were so concerned it would grow back that they removed two ribs as well.

If I were to have all the tumors removed, none of my body parts would be left. The hope is to limit the number of surgeries performed on people with NF. Every time you go under anesthesia, you are at a risk. It's especially risky for children and young adults.

As for the pain, it can sometimes be unbearable. It's as if electrical cords are wrapped around your insides. It can feel like spears are piercing you under your skin.

Sure, there are days I feel like saying I'm done and I don't want to get out of bed. But I try to use my pain for a purpose: to help younger generations with NF. It's thought to affect around one in 3,000 people. Schwannomatosis is the least common form; about one in 40,000 have the condition.

The Children's Tumor Foundation made me an ambassador for 2023. It's not about me, but I want these kids to see me as active and as a fighter. I'm raising money for the foundation and fighting for them.

I'm doing everything I can to support kids with the same conditions

There's been a lot of research into NF, but we need more. The doctors can't do it on their own. They need patients to be involved and register for clinical trials. We can't move forward without the help of our NF community.

I'll continue to reach out to those affected by NF. I recently met a 1-year-old boy with a tumor on his optic nerve. It gave me the opportunity to love on him and tell his mom, "I'm here to walk with you through this journey."

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