Complicated Neurofibromatosis: Courage Found

While birds sing near trees dripping with ice crystals, Tracy removes the veil of privacy that has protected her for years. On the surface of her face, neck, arms and legs, there are clusters of tumors – large and small, “like pebbles in the sand”. For decades, Tracy has been managing neurofibromatosis (NF) type 1, a hereditary disease that can cause nerve-associated tumors and chronic pain. Her physicians would refer her to compassionate specialists at Henry Ford who had expertise in this complex disease, and who would perform 12 surgeries to control and monitor the ever-growing number of tumors to prevent a deadly type of cancer.

After receiving a bachelor’s degree, Tracy earned a master’s degree in English and a second master’s in creative writing. “I worked so hard, thinking that if I had more education or more accolades that would help me be accepted,” says Tracy.

Education or Courtesy

“Most people see me and stare or point,” says Tracy, whose excellent hearing acts like radar. “I have to deal with the mental challenge of people’s reaction. Sometimes, I try to educate people.” Other times, she just wishes they would have courtesy.

For kids who stare, she often starts a conversation and gives them a book from her tote bag, hoping they’ll see her kindness. To help others understand the disease, she’s writing a kids’ book about a character with NF.

As a toddler, the NF first appeared as café-au-lait spots. During puberty, the spots faded and raised bumps appeared on her face and arms, causing difficult experiences.

NF isn’t new to Tracy’s family. Her mother had numerous internal tumors. One became malignant and deadly. Several years ago, Tracy’s sister had a compressing tumor on her spine and was scheduled to see Tobias Walbert, M.D. director of the Multidisciplinary Neurofibromatosis Clinic at Henry Ford. One day before her appointment, she had a cardiac event and slipped into a coma. Nevertheless, Dr. Walbert visited her several times each week until she was transferred to a rehab facility and succumbed to NF.

“He is a very good person,” says Tracy who has been Dr. Walbert’s patient for more than 10 years. “He is very personable, very knowledgeable and very kind. He knows you as a person, not only a patient.”

In recent years, Tracy began having headaches, numbness in her hands and arms, and severe pain in her back. “I felt like I was constantly wearing a heavy backpack,” says Tracy. “It was excruciating trying to sleep.” MRI scans were taken, and several tumors were found on Tracy’s spine.

Specialized Team and Support

“The tumors were deeply intertwined with normal tissue and extensive experience was required to safely remove them,” says Dr. Walbert. So, Tracy was referred to peripheral nerve surgeon Jason Schwalb, M.D.  “Having a specialist like Dr. Schwab sets our clinic apart. Our specialized team monitors these plexiform tumors before they become malignant.”

Says Tracy, “Dr. Schwab was very truthful and direct. He makes you understand what’s going on. My confidence in him has always been very good.”

Recovery after surgery was painful. “It was like being hit with a truck,” says Tracy. She received months of physical therapy to strengthen her back and help her walk.

“My family has been my support. They are my defenders,” says Tracy who has a pet Yorkie and a home filled with family pictures and books. “I’m blessed to have them and my small circle of friends. I’m very private and guarded.”

Since her most recent surgery, Tracy began receiving disability payments. “I’ve been working since I was 14 and always had pride in myself as a self-provider,” says Tracy. In the past, her jobs have been hidden from the public eye, often working in telecommunications.

“I’ve applied for jobs that have met my educational qualifications. But when I’ve showed up for interviews, I’ve been denied jobs. People may not see me, or my education, or my talent. I believe it’s because of the NF.”

At Henry Ford, Tracy participated in a clinical trial for a new drug called an MEK inhibitor. It has been shown to stabilize or shrink plexiform tumors in children and was being tested in adults. Similar to patients taking chemotherapy, those using this medication are closely supervised.

Driven to Succeed

“What keeps me going is proving that there’s a place for everyone, and everyone deserves a chance, no matter what they look like. I owe it to my mom and sister who can’t fight any more. They’ve given me superpower to get my story told,” says Tracy.

“But I haven’t given up. This disability isn’t going to cripple me. I’m using my time to talk about NF. Each post I make on Instagram takes bravery, and the responses are very encouraging. I would have never put my picture online before,” says Tracy, removing another veil of privacy.

“Tracy is a true hero, living with this disease and turning it around,” says Dr. Walbert. “A lot of people would be defeated by a disease like this. But she’s enabling other patients to fight and not give up. She’s one of those patients who inspires us to work toward helping other patients like her.”

For people who feel overwhelmed by health issues, Tracy advises them to find a support system. Continue to pursue your dreams and stay out of your comfort zone. Most important, she says, “Try to treat all people the same. Be good to people and don’t discredit their kindness, and their ability to love and care.”

Tracy’s future

When her children’s book about NF is published, Tracy hopes to use the media and the internet to highlight the lives and accomplishments of people with NF, while she raises funds for research.