If you ask Ciera Ramos, 24, what it is like to travel the world with 20/200 vision, she’ll ask you what it’s like to travel with 20/20 vision. Born with optic nerve atrophy (ONA), she grew up not knowing the difference. Resourceful by nature and with the support of the University Eye Center at Ketchum Health, Ciera has embraced the challenges of limited vision and grown into an adventurous world traveler.
Ciera’s vision issues became apparent to her teachers and parents when, in kindergarten, she struggled with distance vision such as reading the chalkboard and recognizing faces. She remembers her parents taking her from one optometrist to the other. “They couldn’t see anything physically wrong with my eyes and they weren’t sure what the problem was,” she remembers. “One suggested that I wanted glasses to look cool!”
But the answers came when Ciera met Catherine Heyman, OD, ’93, Associate Professor at the Southern California College of Optometry and member of the Pediatric Vision Care Services team at the University Eye Center at Ketchum Health. Dr. Heyman’s comprehensive evaluation correctly diagnosed Ciera with optic nerve atrophy, an extremely rare condition. Visual impairment affects less than 1% of the population and ONA is an even lower percentage.
Associate Professor at the Southern California College of Optometry and member of the Pediatric Vision Care Services team at the University Eye Center at Ketchum Health. Dr. Heyman’s comprehensive evaluation correctly diagnosed Ciera with optic nerve atrophy, an extremely rare condition. Visual impairment affects less than 1% of the population and ONA is an even lower percentage.
Optic nerve atrophy results from mild to severe damage to the optic nerve that can affect central vision, peripheral vision and color vision. Causes include tumor, trauma, decreased blood supply (ischemia) or oxygen supply (hypoxia). For Ciera, the damage to her optic nerve occurred at birth due to labor complications.
“The back of the eye is the freeway that connects visual information to the brain,” Dr. Catherine Heyman explains. “When those nerves are not working properly, information from the outside world to the brain is not clear.”
While there is no cure for ONA, proper treatment with glasses or contact lenses and low vision rehabilitation can provide patients with good use of their remaining functional vision. Dr. Heyman played an important role in Ciera’s formative years, helping her to succeed in school and life.
“We initially decided to come up with treatment options that would help her do better in school,” Dr. Heyman remembers. “The best thing with low vision patients, especially children, is to go at it in terms of goals.”
However, like most children born with low vision, Ciera had adapted to her eyesight. She learned how to find her friends on the playground by memorizing what they wore and she was very good at listening to and memorizing directions when she couldn’t see the chalkboard.
Her family, though, worried how Ciera would grow up to live an abundant, independent life. Would she ever learn to drive? Could she play sports like the other kids?
“Around the time I was diagnosed, my grandma took me to the store,” she recalls. “As we were checking out, I wanted to push the cart back.” Ciera’s grandma hesitated, fearful that her then 6-year-old granddaughter would get lost or become afraid if she couldn’t see to find her.
But she agreed and watched Ciera like a hawk, ready to swoop to her rescue.
“I marched over with the cart and marched right on back and she asked, ‘How did you find me?’” Ciera smiles. “I said, ‘Duh, grandma, I counted the checkout lanes!’”
For Ciera, it was simply how she did things. “I didn’t know any other way but for my grandma, it was an awe-inspiring moment. My world was so different and yet I was able to function and find my way back,” she says.
GROWING WITH HER PATIENTS
Dr. Heyman took a progressive approach with technology that adapted to Ciera’s needs as she got older. Ciera was given a monocular and magnifying glass for reading and her parents worked with her teachers to make sure that she sat in front of the classroom and received worksheets that were high contrast and not cluttered.
“As children grow up from elementary to middle school and to college, we switch up their technology aids so that we meet their needs where they are in their lives,” she says.
“On a good day, I have 20/80 vision. I know I’m never going to have 20/20, but I’m always open to trying new things,” says Ciera.
She appreciated the tools and resources available at Ketchum to help her in her growth.
“In college, I utilized a transformer, a telescope-like instrument that gave me a better view of the board to catch everything. Calculus is really hard to listen to,” she says.
In the beginning of her career, when Ciera first became her patient, Dr. Heyman remembers that adaptive technology was clunky. Because of the rarity of conditions such as ONA, the market had not developed specific technologies for patients. But as the technology market has realized the needs of low vision patients, the team at Ketchum’s University Eye Center has eagerly adopted this next generation of adaptive technology and the devices now available.
“Because of technology like smartphones and other mobile devices, today’s kids come in understanding how to use this technology, so we don’t have to teach them,” she says. “We can adapt these technologies for them to live independently.”
Dr. Heyman takes great pride in the Mary Ann Keverline Walls Low Vision Center at Ketchum Health, not only because they possess every technology option available, but because it is staffed with technical specialists who themselves are visually impaired.
“They bring an element of compassion in that they help patients use these devices based on their own personal experience,” she says. “It is powerful for a patient to work with someone who can relate to them because they are dealing with the same struggles.”
A LIFETIME OF EXPERIENCE
Dr. Heyman has seen that the doctors at the University Eye Center truly care about their patients. She received her Doctor of Optometry degree in 1993 from the Southern California College of Optometry and completed a residency in pediatric optometry and vision in 1994.
She takes pride in sharing that commitment, as she views herself forming partnerships with each patient and their families to collaborate in giving them the best care.
“My colleagues here work together very closely and I can go to any of them for help,” she said. “We can give the most comprehensive treatment for each patient.”
Additionally, she enjoys teaching, working and doing research within a state-of-the-art clinical facility. She feels it is the cornerstone of her education and training.
“At the University Eye Center at Ketchum Health, students get the opportunity to see a patient, like Ciera, who couldn’t see the board and then can see it because of something the student was part of,” she says. “It is a profound experience to learn from experts and take that knowledge to help their own patients.”
Dr. Heyman is also the coordinator of the Vision Program at the Blind Children’s Learning Center in Santa Ana and oversees the Special Population/ Pediatric Visual Impairment Service at SCCO.
Her research interests include accommodative response in children with visual impairment as well as work with the Pediatric Eye Disease Investigative Group network.
“Our entire department participates in clinical trials that look at different aspects that affect children’s vision. In some cases, it has changed clinical practice,” she says.
FINDING HER WAY BACK
One of the challenges that hasn’t changed for ONA and low vision patients is the geography of Southern California. For these patients, getting from one place to the other is a challenge.
But Ciera, who graduated from Chapman University in 2015 and drives a car, feels that her vision impairment strengthened certain character traits. She is a determined, detail-oriented person who is keenly observant of her surroundings.
“Sometimes, when we go out to a basketball game or a show and someone needs to find the restroom, I’ll say no problem; it’s down the hall on the right a hundred feet on the left,” she says. “Everyone always asks how did I know that? But for me, I have to make those mental cues and remember those things.”She recalls the questions and fears she and her family had all those years ago when she was first diagnosed. She took on all those challenges and this past summer, quit her job and traveled solo through South America.
“I love proving people wrong,” she says. “If they say I can’t do something, or I think they think I can’t do something, I show them I can live a full life and do what I put my mind to.”
If anything, as she discovered on a solo trip to Germany and Austria in 2016, the challenges of traveling internationally are not so different than when she pushed the shopping cart for her grandma. Although, she didn’t exactly enjoy getting lost in the airport terminal for 40 minutes in Germany because she’d missed the sign.
“There’s an adrenaline and joy you can find when traveling internationally,” she says. “Being able to get lost and find yourself is an incredible experience.” She advises anyone who is perceived to have a disability not to be the one who sets their own limits.
“Peers, teachers and society can be the ones who set boundaries for you,” she says. “But you have to understand what you’re capable of.”
Ciera shares her travel experiences at her blog: BeyondWhatEyeSee.com