Close your eyes. When you open them, what do you see?
These words in the Healthcare Brew newsletter or website, to start. Beyond your screen, a world you know to be familiar. From your morning commute to your evening shower, whether you’re in Los Angeles or Austin or New York City, there’s comfort in knowing that the ride home will look the same.
Now imagine all of that goes away.
That’s what happened to Sierra Domb nine years ago on her drive to university. Her day started with waking up with floaters in her vision—something that’s probably occurred to many of us after rubbing our eyes too hard—and ended with her life changing forever.
“My vision went black, behind the wheel. It was one of the scariest, most traumatizing moments in my life,” Domb told Healthcare Brew.
Moments later, Domb’s vision returned, but it wasn’t the same. From that day on, her vision would be plagued by static—almost as if it were snowing.
The months that followed
For about 18 months, Domb underwent medical tests and visited optometrists and ophthalmologists—all for tests to come back normal and for doctors to question if she was making it up.
“I basically traded in my life to play mystery diagnosis,” Domb said.
Finally, Domb was referred to a neuro-ophthalmologist in 2017, who suggested that her problems could be neurological…but there wasn’t much he could do for her.
“He was like, ‘It’s even possible you might have some undiscovered condition, because we don’t know enough. Just try to go home and live your life, I guess,’” Domb recalled. “How the hell am I supposed to be a normal person again after I’ve been given no confirmation, no diagnosis?”
Hunting for answers online, Domb found numerous similar accounts who “were all experiencing the same set of symptoms [and] sustained marginalization, isolation, and lack of resources in the medical community.”
Eventually, Domb found a research paper by Peter Goadsby, a highly respected neurologist who, among other achievements, won the prestigious (and aptly named) Brain Prize in 2021. His research paper described something called visual snow syndrome (VSS). It matched her symptoms: static in her vision, sensitivity to light, migraines, tinnitus, and more.
Reaching out to Goadsby, Domb learned that very little is known about VSS, mostly due to lack of interest and funding. Since VSS only affects 2%–3% of the population, according to the Cleveland Clinic, not many know about it—but it doesn’t qualify as a rare disease, either, because it affects more than 200,000 people in the US, so it gets little research funding.
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In early 2018, Domb officially received a VSS diagnosis from Goadsby. That same year, she came up with the idea to host a conference about the condition, inviting patients to hear medical professionals present their research on VSS.
“Most of the people who were there, this was the first time that they had ever gotten validation—from any sort of scientific data or medical professional in their life—that their condition was real,” Domb said. “That was the first real effort. And then from that, the Visual Snow Initiative was born.”
‘This can’t stop here.’
The Visual Snow Initiative (VSI) bore a hefty burden—not only did the nonprofit represent a community of people with mild to severe symptoms but it also was responsible for proving that VSS was, in fact, a condition to take seriously. To do so, Domb sought to obtain an ICD-11 code for VSS.
ICD codes are used by doctors and health systems to track medical conditions in a patient’s electronic health record, which are then used to bill insurers for the cost of care. The codes allow organizations like the World Health Organization (WHO) and CDC to record and analyze health statistics, which may be used in planning for payment systems and care allocation, according to the WHO.
“Getting an ICD code...will allow [VSS patients] to no longer have to ever be questioned about our condition,” Domb said. “And importantly, it’ll give us access to financial support and insurance coverage eligibility.”
With donations, Domb said VSI has raised awareness and funded research that proves “VSS is a distinct and legitimate neurological disorder with visual and non-visual symptoms.” From there, it’s up to the WHO and the CDC’s National Center for Health Statistics (which WHO authorizes) to grant an ICD code for VSS, according to Domb.
“This will, if the World Health Organization acknowledges it…prove to a lot of people it was real all along,” Domb said. “It can be something people look up and reference, and the future generations of doctors can be taught about VSS in their textbooks so that no one has to go through what we’ve all had to go through.”
Correction 05/13/2024: This article has been updated to correct the timeline of Sierra Domb's vision static and to update the code from ICD-10 to ICD-11.