CLEVELAND — Renee Arrington-Johnson said she was 13 years old when doctors diagnosed her with retinitis pigmentosa (RP), a group of rare inherited eye diseases that cause progressive vision loss.
“My mother said I used to walk into the walls when I was little. And we always knew I couldn't see at night, which is one of the first signs of having retinitis pigmentosa,” Arrington-Johnson said.
Today, she said she has less than five degrees of peripheral vision.
“I describe my vision as being able to spot a pencil across the room but tripping over an elephant right in front of me,” Arrington-Johnson said. “I have what some people call tunnel vision. You can stick your hand out to shake my hand and I won't see it. If you walk past me real quick, I might not notice you. At night I really have no vision at night.”
The Cleveland Clinic states an estimated two million people worldwide, with an estimated 100,000 people in the U.S.
Arrington-Johnson remembers early on, doctors telling her she should learn to read braille and find a job where she didn’t need her eyes to see.
“But at that age I really didn't want to hear that, and I didn't think it was a big deal,” Arrington-Johnson said. “So, I just went on about my life for a long time until it got to the point where I was like, ‘Okay, I really do have to start facing up to the fact that I really don't see that well.’”
She’s now retired after spending many years at General Motors, where she served as chairperson of a group that advocated for people with disabilities.
“When I retired I wanted to focus on people who had a disability like myself who had vision loss. So, I've been advocating for people with vision loss specifically since 2017,” she said.
Arrington-Johnson is involved with the American Council for the Blind, the National Federation for the Blind and other groups that focus on people with vision loss.
On Saturday, May 11, she’ll participate in another important cause- the 16th Annual Cleveland Vision Walk. The fundraiser is at Upper Edgewater Park. On-site registration begins at 9 a.m. The walk starts at 10:30 a.m.
“The focus of the Foundation Fighting Blindness is for inherited retinal diseases. Some of the ones that are more common are age-related macular degeneration, retinitis pigmentosa like I have, (and) Stargardt disease,” she said. “The focus is on finding a cure."
On its website, the Foundation Fighting Blindness states it “funds innovative and cutting-edge research in promising areas such as genetics, gene and stem-cell therapies, retinal cell transplantation, and pharmaceutical and nutritional therapies. The Foundation’s funding often provides the critical bridge between discovery research, proof of concept, and corporate investment in clinical trials and commercialization.”
Arrington-Johnson said she’s directly benefited from the organization's efforts.
“My doctors, who consult with the foundation, have put me on a regimen of different types of vitamins and nutraceuticals that help me to retain what vision I have left, and they teach me how to preserve my vision,” she said.
"Sure Looks Good to Me" is the name of her walk team. She chose it because it’s the title of one of her favorite songs from Alicia Keys. Arrington-Johnson said her team is close to reaching its $1,500 goal. The overall goal for the Cleveland Vision Walk is $70,000.
She said the walk is about fun, education and interacting with new people.
“It’s an opportunity for you to meet organizations that support the blindness community. It’s an opportunity for you to meet people who might have guide dogs or might use white canes. You can see that we function and have fun and get along just like everybody else and fight just like everybody else,” Arrington-Johnson said with a laugh. “It's always good in my opinion to have that experience with people that are different from you because then you realize you're not really different, you just do things a different way.”
