Darin's Story

Broadcast Technician Featured as One of the Many Faces of NF

When Darin Donahue came into this world he had a number of light to brown pigmented birthmarks known as café-au-lait-spots, on his skin. His mother explained to him that they were "the doctor’s thumb prints,”. Skin spots are common among children, however when more than six spots are present, it can be one sign of neurofibromatosis type 1 (NF1), a common genetic disorder that causes skin changes and tumors to form on nerve tissue. At about age 12, Darin was officially diagnosed with NF1.

“No one else in my family had it,” Darin explains. In his case, NF1 was caused by a spontaneous mutation. Although many people with NF1 inherit the gene that causes the condition, it is estimated between 30 and 50 percent of cases arise from a spontaneous genetic mutation in the NF1 gene.

School was a struggle for Darin

Although the spots did not pose any major issues for Darin early on, there were other signs of challenges he would face.

“I remember in nursery school I was given a vision test and insisting the E was pointing one way but it was pointing the other way,” he recalls. Darin was diagnosed with dyslexia, a reading disability. In kindergarten he also had fine motor skill challenges such as not being able to hold a pencil to write numbers and letters. The 62-year-old Ferndale resident also remembers being teased in school because he was shorter in stature. Henry Ford Health Neurofibromatosis Neurologist and Clinic Lead, Tobias Walbert, M.D. Ph.D. explains that neurofibromatosis can frequently be associated with a higher risk of learning disabilities. Many who have the condition are also below average height or have struggled with scoliosis at a younger age.

“Neurofibromatosis can affect people in many different ways. Patients are at higher risk for nerve sheath tumors, so called plexiform fibromas, and even breast cancer.” Dr. Walbert says children also need to be screened for brain tumors along the optic nerve. “People with NF1 frequently develop numbness in their feet. All these issues can contribute to reduced depth perception or impaired balance.”

Darin finds match he was looking for with Henry Ford neurofibromatosis team

As the years progressed, Darin has faced several health-related issues. After seeking help with numerous health providers, he says he found a good match with Henry Ford Health in 2009. “I have had tumors associated with NF1 removed and received help with my balance issues through physical therapy at Henry Ford Medical Center-Royal Oak. I’ve also been seeing Dr. Walbert for several years and am appreciative of all of his insight and advice,” he says.

Dr. Walbert emphasizes that patients with NF1 can present with multiple distinct medical problems and it requires a team of specialists to help them make the right decision. “Rule number #1: First do no harm, don’t rush into any surgeries that might do more damage than help,” he advises.

Health issues don’t stop Darin from his active role as a broadcast technician

After studying broadcast production in Arizona, Darin found his professional calling in Detroit where he was able to secure a job as a broadcast technician for Detroit PBS. His productions skills have also landed him jobs for a variety of sporting events and television networks including Fox. “I continue to provide production related work for many events that are in town. It’s a lot of work but I really enjoy it,” he shares.

Darin shines a light as one of the faces of NF

Like so many others who have NF, it can be a challenge to deal with the stigma and discrimination associated with NF including the visible skin spots and tumors as well as the invisible symptoms such as learning disabilities. Darin is doing everything he can to raise awareness of the common disorder. He has been featured by artist Rachel Mindrup for her work “Many Faces of NF”. His advocacy work also includes involvement in NF sponsored events, seminars, focus groups and raising money for NF walks like the annual tradition of the Cupids Undie Run in Detroit around Valentine’s Day to raise awareness and money for research. The Run encourages participants to wear festive underwear to make NF visible and increase acceptance. It’s a concept that Darin embraces.

“I like to tell people NF is the most common neurological disorder no one has ever heard of and it’s important to me to shine a light on NF to make it more visible while educating and advocating for research, treatment and acceptance for those with NF.”

For further information visit neurofibromatosis at Henry Ford Health.