By RYOKO NAKAMURA, Rafu Japanese Staff Writer
More than 500 people walked together through the CBS Studio Center on a sunny Sunday morning, hoping to raise awareness, find a cure, and show support for individuals with neurofibromatosis (NF), a common, yet little-known, lifelong disorder.
One of the participants was Diane Kimi Akutagawa, who was diagnosed with NF nearly 10 years ago.
Before her diagnosis, she had never heard of NF and didn’t know anybody else with the disorder to share her fear and concerns with. She often felt isolated until she heard about the NF Walk four years ago.
“I find it important to participate in the NF Walk so I can be around other individuals like me, and I don’t feel so alone,” said Akutagawa.
As soon as she heard about the walk, she formed her own team, Team Twinkie. The first year, her team had only seven members, including her parents and a few friends. But it grew to ten people last year, then to 42 people this year.
Akutagawa is not alone. Since the inception of the walk in 2009 by the Children’s Tumor Foundation (CTF), this annual event has expanded to include many other cities. Thirty-seven NF Walks took place nationwide this year.
In Los Angeles, the 2013 NF Walk was held at the CBS Studio Center on Oct. 20. Fritz Coleman, NBC4’s weathercaster, was the emcee for the event, which drew over 500 participants and raised approximately $130,000. The funds will be used for NF research aimed at finding a cure.
According to the CTF, NF is a genetic disorder, although it can also result from spontaneous mutations. NF causes tumors to grow on nerves throughout the body. It can lead to blindness, bone abnormalities, cancer, deafness, disfigurement, learning disabilities, and excruciating pain.
It affects both sexes equally and it is not more prevalent among any particular racial, ethnic, or geographic population. There are three distinct types: NF1, NF2, and Schwannomatosis.
NF1 occurs in one in every 3,000 births and affects millions worldwide. The primary symptoms are multiple café-au-lait spots and tumors on or under the skin. Tumors may grow in the brain, on cranial nerves, or on the spinal cord. About 50 percent of NF1 patients have learning disabilities.
NF2 occurs in one in 25,000 births, and is characterized by brain and nerve tumors. Because of the location of these tumors, hearing loss and balance problems are common with NF2.
Schawannomatosis is a rare form of NF that manifests as severe, chronic, and unmanageable pain. It is believed to affect about one in 40,000 individuals.
At this point, there is no cure for NF. The only option is surgery to remove the tumors. Most patients must endure multiple surgeries throughout their lives.
Although Akutagawa’s condition is considered mild, she requires lifelong checkups and MRIs to monitor for tumors. This year alone, she has already had two surgeries to remove tumors. Fortunately, none of them was cancerous.
“My goal, first and foremost, even above raising money, is raising awareness for NF,” she said. “It is important for people to realize that NF is not contagious. It is not a disease. It is a disorder. I want to educate people about NF.”
As she shares her story with as many people as possible through the NF Walk and social media outlets such as Facebook and Twitter, she also continues to support others she meets who are living with NF.
For more information about NF, visit the Children’s Tumor Foundation website at www.ctf.org.