Spreading neurofibromatosis awareness

Clinton Township mother works to shine light on NF

By: Nick Mordowanec | Fraser - Clinton Township Chronicle | Published May 15, 2018

 The front lawn of Clinton Township residents Daryl and Sheila Cohoon is marked with numerous signs of individuals suffering from neurofibromatosis, or NF. May is NF Awareness Month.

The front lawn of Clinton Township residents Daryl and Sheila Cohoon is marked with numerous signs of individuals suffering from neurofibromatosis, or NF. May is NF Awareness Month.

Photo provided by Sheila Cohoon

 Daryl, Sheila and Nicolas, 9, pose for a family photo.

Daryl, Sheila and Nicolas, 9, pose for a family photo.

Photo provided by Sheila Cohoon

 A recent proclamation for NF Awareness Month, signed by Gov. Rick Snyder, was held up at the Michigan State Capitol in Lansing. NF Awareness Month encompasses the entire month of May.

A recent proclamation for NF Awareness Month, signed by Gov. Rick Snyder, was held up at the Michigan State Capitol in Lansing. NF Awareness Month encompasses the entire month of May.

Photo provided by Sheila Cohoon

CLINTON TOWNSHIP — Not everyone knows what neurofibromatosis is, but Sheila Cohoon is working to change that.

Neurofibromatosis, or NF, is a genetic disorder where tumors form on nerve tissues. The tumors can develop in different parts of the nervous system, including the brain, spinal cord and nerves.

Rebecca Harris, public relations manager for the Children’s Tumor Foundation, said that NF affects one out of every 3,000 people — equivalent to 125,000 people in the United States and about 2.5 million globally. In 2014, CTF launched “Shine a Light,” which has involved lighting up landmarks around the world every May for NF Awareness Month.

“The focus, though, is on those living with the disease,” Harris said. “The campaign engages the community, indeed empowering patients, their families and their friends to do something that raises awareness and expands an understanding about this disorder that affects more people than cystic fibrosis, Duchenne muscular dystrophy and Huntington’s disease combined — which ultimately leads to increased funds for research.”

May 17 is NF World Awareness Day. Gov. Rick Snyder has also issued a proclamation on NF, and people wear blue and green to show support.

Clinton Township residents Daryl and Sheila Cohoon have a son, Nicolas, 9, who was born with NF1.

Nicolas was diagnosed at 12 months old, but his journey actually started when he was four months old. His mother said she noticed strange birthmarks on his body, and they kept multiplying.

At five months, he went to his doctor. The “birthmarks” were later identified as café au lait spots. A blood test was conducted to confirm his condition, which included a low muscle tone and physical disabilities. It came back positive

“This (disorder) doesn’t discriminate at all. … It was completely devastating to hear that your only child — the one child you thought you’d never have — has this tumor condition that you’d never knew where it would end up,” Sheila Cohoon said.

NF has three varying levels: NF1, which often involves more physical stigmata and occurs usually in children and adolescents; NF2, which causes hearing loss, poor balance and often starts in teen years; and schwannamatosis, characterized by tumors called schwannomas that occur on the nerves.

Tracey Morson, a neurologist at Henry Ford Macomb Hospital who has worked with NF patients, called it a “rare condition” that often starts within families.

“It’s usually genetic,” she said. “What happens is that you have a family member and they have it, and it heightens awareness in other people.”

In terms of finding a cure, she said the only current options revolve around symptomatic treatments — like skin tags for lesser conditions, or plastic surgery for more blatant ones.

While Nicolas is doing well now, the condition is progressive. He could experience the sickening of his optic nerves and blindness. He already has ADHD and a nonverbal learning disorder — as well as what Sheila calls “severe behavior issues.”

All Sheila wants is for her son to grow up and know his bumps aren’t contagious, that he can lead a regular life. She hopes that someday NF will be treated in a similar fashion to breast cancer.

“Everybody has something to deal with, and people with NF is just people dealing,” Sheila said. “Think of everyone as an individual going through something, but they want to be treated normally."