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Cherokee Nation citizen Jerry Willman, front left, who was diagnosed with neurofibromatosis in 1983, participates in the second annual NF Walk on May 19 in Tulsa, Okla. TESINA JACKSON/CHEROKEE PHOENIX




BY TESINA JACKSON
Reporter

TULSA, Okla. – When Cherokee Nation citizen Jerry Willman was 17 he wanted to make a career in the Navy. It didn’t happen. After being examined by a doctor, Willman learned he had a genetic disorder called neurofibromatosis that prevented him from enlisting. 

“The doctor who examined me, he’d seen it before.” Willman said. “At that time, it was still considered the Elephant Man’s Disease, but that’s a different disorder.” 

Neurofibromatosis, or NF, is a genetic disorder that can affect the brain, spinal cord, nerves and skin. It causes tumors to grow along the nerves internally and externally. The tumors can cause severe complications and/or chronic pain. NF can either be an inherited or produced by a gene mutation. 

Those with NF can become deaf, blind, disfigured or crippled. Some cases occasionally result in death. Learning disabilities, high blood pressure, epilepsy and some cancers are also associated with NF. 

According to the Children’s Tumor Foundation, NF is classified as neurofibromatosis Type 1, Type 2 and schwannomatosis Type 1. NF1 occurs in approximately one in 3,000 births. NF2 – also referred to as bilateral acoustic NF, central NF or vestibular NF – occurs in one in 25,000 births. Only recently recognized, schwannomatosis appears to affect one in 40,000 children born and is largely diagnosed in adulthood.    

“It is genetic. You can get it from a parent if they carry it or it just happens,” Willman said. “It’s spontaneous mutation. Neither side of my family had it. I just got the luck of the draw or unlucky of the draw you could say.”

Willman said NF hasn’t prevented him from daily activities. He just deals with more pain and is disabled due to tumors on his hands.  

NF is present among all racial groups and affects both sexes equally. It affects more than 100,000 Americans today. Currently, there is no prevention, treatment or cure for NF. 

Willman was first diagnosed with NF1 in 1983. He said the doctor told him all he could do was “go home and wait to die.”

Willman tried to learn about the condition, but found it difficult because of the lack of information. It wasn’t until the late 1980s when the disorder was studied more. 

One organization that Willman learned of and supports is the Children’s Tumor Foundation, a nonprofit dedicated to finding NF treatments through support of medical research and to improving the lives of those affected by NF. The foundation also provides a NF clinic network and a national chapter and affiliate network that offer support to families living with NF.   

On May 19, the foundation held it’s second annual NF 5K Walk at La Fortune Park to help raise awareness and funds. 

“It’s a great walk,” Willman said. “It’s a great place for everybody with NF or related to NF to get together and meet. It’s just like a big family.”  

Dianna Inclan, chapter president for the Tulsa NF network with the Children’s Tumor Foundation, helped start the walk after learning her husband and two children had NF. 

“My husband has neurofibromatosis, and I have two children that do, and we were trying to figure out a way to help my daughter, especially,” she said. “She’s a little bit older and needed to have some other people that she knew that have neurofibromatosis, and a doctor here in town is a geneticist and he just kept telling me ‘we really need a group in Tulsa.’ So I said ‘ok, here we go.’”

The walk’s primary sponsor was Walgreens, which has even raised money for the Children’s Tumor Foundation.

“This fits right in line with our mission and mission statement, and it is a great cause. The Children’s Tumor Foundation is a great cause to raise money for,” Devin Wilcox, Walgreens community leader of Tulsa South, said.

Today, research and awareness continue to give a better understanding of the disorder.  

“NF is not something that we have talked about very often. It’s been more of a shaming. We just don’t talk about it, and so now we are able to actually talk about it,” Inclan said. “The kids are now not ashamed of what’s going on. They have an understanding of it. My husband has been able to talk about the different issues, and now we have met so many other people, and it’s been incredible to watch them come out of their shell. People that never came out of their house are now coming and meeting us, so it’s been awesome to watch it involve my family, but also hundreds of other people.” 

tesina-jackson@cherokee.org

918-453-5000, ext. 6139