'Visual Snow' sufferers hope for cure of rare condition that causes TV static-like vision

CASTLE ROCK, Colo. - Imagine if every day, you saw circles or static or colors that weren’t there and that never went away.

That’s the description of a rare condition called Visual Snow, but even many doctors have never heard of it and there is no cure.

“I am painting what I wish I saw,” said Karina English,  as she paints in her living room.

The Castle Rock teenager's vision became obscured three years ago.

“You know how when a TV is on the wrong channel and there's all those black and white little dots? It’s kind of like that, but more transparent," said English. "When I look outside, I see circles and random squiggly colors.”

She is the girl who sees snowflakes when it isn’t snowing.

"At first, I thought I was going blind. I was horrified," said English.

When Karina’s vision changed, she said, doctors ran test after test, first on her eyes, then on her brain.

“There’s no lesions on my brain and no swelling," she said.

Every test came back normal, but English felt anything but.  At her lowest point, she felt defeated and even suicidal.

"They were telling me that I was just having migraines,” said English. “They pretty much labeled me a crazy person and sent me on my way with some prescription pills."

But Karina wasn’t fighting the condition on her own. Her mother, Karen Smith, never stopped believing and never stopped searching.

"After one doctor’s appointment, I came home and Googled 'ocular migraines,'" said Smith. "And then I put the word constant in front of it, and boom!  Visual Snow popped up all over."

They finally had a name – Visual snow, and English said a weight was lifted.

"She just showed me this video and I started crying, and I was like that's me. That's what I'm going through! That's what I see," said English.

Dr. Victoria Pelak, a neuro-ophthalmologist with University of Colorado Medical School, said the condition is easy for doctors to miss because it is so rare.

The good news is, she said, there are no known cases of visual snow causing blindness.

“One way to look at it is the brain is filled with circuits," said Pelak. "The thought is [Visual Snow] is an electrical circuit you can't shut off -- like a lamp you can't shut off."

Treatments include drugs for altitude sickness or seizures. For many patients, though, nothing works. There is no cure.

"Part of the problem -- it's fallen between the cracks," said Dr. Peter Goadsby, with the University of California San Francisco medical center.

Goadsby is spearheading Visual Snow research, focusing first on diagnosing it as its own condition.

"Some people are interested in migraines and some in vision, but I don't think we've joined the dots up -- probably a bad metaphor with Visual Snow," said Goadsby. “But people with visual snow can take some comfort knowing that everyone is not ignoring them. We're starting to listen and when we listen what they're saying is very clear."

For English, real comfort comes from a Visual Snow Facebook group where people go to find answers and assurance.

"I love this because if some people are freaking out about things I've gone through, I can say, 'It's OK. You're OK,'"  said English.

English said she plans to go to medical school to research conditions like Visual Snow.

"I just try to make the best out of whatever comes my way," said English. "Because I'm not going to let it put me back in that dark place I was in."

After she found some answers, she may still see snowflakes on sunny days, but her vision is stronger than ever.

"I just want people to know this is real," she said.

Print this article Back to Top