Shreveport teen hopes to regain her life from incurable vision condition
By LINNEA ALLEN
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SHREVEPORT, Louisiana (KTBS) — Imagine going to bed with perfect vision, and then waking up the next morning with vision that changes your whole world.
That happened to one Shreveport teenager.
Ariah Williams is 15 years old. She loves to read and write.
“I love to study. That was my thing,” Ariah said.
Ariah Williams Ariah Williams
And she’s always wanted to be an English teacher to help kids develop a love of literature.
“I wanted them to have a love for my passion, which is writing and reading,” said Ariah. “It’s actually a great outlet to express your feelings.”
But one morning in November, her world changed.
“I woke up and all I saw was TV static, as in, if the TV didn’t have cable on it, nothing but static all around me,” Ariah explained.
Ariah was diagnosed with a rare condition called Visual Snow Syndrome. It’s is a neurological disorder characterized by a continuous visual disturbance that resembles TV static. It has no cure. And as of now, there is no treatment for the condition itself.
“I feel devastated. When you can’t do anything to help your child. That is the worst feeling in the world,” said Annette Williams, Ariah’s mother. “You go to doctors and they say they don’t have any kind of help for you. What do you do?”
Ariah’s condition is getting progressively worse.
“Now with my visual snow, not only is there static, it’s also an after image. As in, I’m looking at you and I turn away, I’m still seeing you,” she said.
She also now has a constant ringing in her ears.
“It’s hard to sleep. It’s hard to just live,” Ariah said. “I mean, this is torturous. I wouldn’t wish it on my worst enemy.”
Feeling helpless, Annette scoured the internet looking for answers.
“I found a doctor in Plano, Texas, that had done an actual study on it,” Annette said.
Dr. Charles Shidlofsky is a neurodevelopmental optometrist who works with neurological vision problems like dyslexia or post-trauma vision issues. He and Dr. Terry Tsang from California just completed an Institutional Review Board study on Virtual Snow Syndrome. Both have had previous success at helping patients overcome the disability associated with the condition.
“I kind of started with the hypothesis that if I can improve someone’s visual snow 20%, I might improve their life 80%,” said Shidlofsky.
Ariah is now one of his patients. The treatment, which cannot cure the condition, will be the same used in the study.
“She’ll be going through a vision rehabilitation program, similar to what we would use maybe for concussion or neurologic injury,” said Shidlofsky. “We’re changing that eye-brain processing. We’re trying to quiet the visual stimulation.”
Ariah understands there is no cure. And while she knows she’ll likely never fully recover, she still has hopes of living a normal life.
“We can’t control it,” Ariah said. “But get me to a point where I can function with this condition.”
Annette says the treatment for Ariah is very expensive and her insurance will not cover it. She has set up a GoFundMe account to help pay for the treatment at gofund.me/dd41967c .
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