I have visual snow syndrome. That’s what it’s like to live with a static-like view 24/7.

Sierra Domb

Sierra Domb, Founder and CEO of Visual Snow Initiative.Sierra Domb

  • Sierra Domb is the CEO and founder of the Visual Snow Initiative and has visual snow syndrome.

  • Visual snow has recently come to light as Idaho murder suspect Bryan Kohberger said it snowed when he was a teenager.

  • This is the story of Domb told to science reporter Paola Rosa-Aquino.

This as described article is based on a conversation he had with Sierra Domb, founder and CEO of the Visual Snow Initiative, about his journey to visual-snow syndrome – a neurological condition in which people see small, snow-like specks in their vision. Edited for length and clarity.

One day in 2015, while I was driving to university, I was blinded. After a few minutes my vision returned, but after that the world didn’t seem the same.

It was as if a curtain was closing my eyes – as if I was seeing the world through an analog TV static. More symptoms began, including extreme light sensitivity and palinopsia, or when you continue to see an image that is no longer there. I also had tinnitus and recurrent migraines.

From there I went to some of the country’s best-known medical institutions.

After nearly 18 months of uncertainty and consulting with many doctors, I was left with no answer as to what was happening to me.

Then I discovered the name visual snow syndrome in an online medical journal. The symptoms described in the article exactly matched my symptoms. I immediately contacted the doctor who wrote the article, and he subsequently diagnosed me with visual snow syndrome.

Visual snow syndrome is a neurological condition that is a constellation of visual and non-visual symptoms. The obvious symptom is seeing static or colliding lights and flickering spots that block your vision 24/7 whether your eyes are open or closed.

visual snow syndrome chart

Chart showing what visual snow syndrome looks like.Visual Profit Initiative

I learned that this syndrome is not well known in the medical community.

There were countless people out there who, like me, had to deal specifically with this situation. Many people go online and have to self-diagnose, guessing what’s wrong with them.

People like me have been marginalized and left without resources simply because of a lack of awareness and education. I tried to fix this by starting the Visual Snow Initiative, a nonprofit that raises awareness, provides education, offers resources, and facilitates worldwide research as well as potential treatments for visual snow syndrome.

We created the initial diagnostic criteria for visual snow syndrome so basically anyone in the world can show it to their doctor to confirm a possible diagnosis. We’ve also created a world-class guide of doctors and experts with visual snow knowledge.

Most often, people with visual snow syndrome go to an ophthalmologist.

They go to an ophthalmologist, an optometrist or ophthalmologist, and the test results are normal since there is no structural problem with their eyes.

Research has revealed that visual snow syndrome is a neurological disorder, meaning that the processing centers in the brain affect your vision.

It turns out that this is not as uncommon as people initially thought.

When I first experienced the onset of visual snow syndrome, I didn’t even realize it was out there in other people. Researchers have discovered that this can affect an estimated 2% to 3% of the world’s population. This percentage may seem small, but to put it in perspective, this is the millions of people affected all over the world.

Additionally, my team and I have interacted with thousands of people with visual snow in more than 93 countries. People of all ages and backgrounds can and are affected every day.

When you have a large population of people born with visual snow, they may not even know they have symptoms. They may think that everyone sees the world that way. These cases may be underreported.

Everyone’s visual profit is different.

People with visual snow may experience all or only a few of the symptoms, including sensitivity to light and tinnitus. The severity of these symptoms ranges from mild to debilitating.

Living with this condition is a different experience for everyone.

When I first experienced visual snow, it was debilitating. Over time, it was improved. For some people it is mild at first and does not affect their daily life, while for some people it does. Many function normally and can be life-changing for others.

The defining commonality for anyone with visual snow syndrome is their 24/7 static vision, whether with your eyes open or closed.

Left, regular sight.  That's right, the vision of visual snow syndrome.

This graph shows the view of someone without visual snow syndrome on the left and the view of someone with visual snow on the right.Visual Profit Initiative

People can attribute their visual profits to a particular event.

When you had a concussion, was that the reason for your visual wife? Was it X? was it y?

There has been a lot of speculation about the root cause and the truth is there are so many different reasons people attribute to visual snow and it can be hard to pinpoint what everyone has in common, especially when you have people who were born with something and then you have people who get it at some random point.

You’ll find commonalities in general, but that doesn’t mean that every person with visual snow syndrome has the same experience or is caused by exactly the same thing.

To date, researchers are unaware of a cure for visual snow syndrome.

Part of my job with the Visual Snow Initiative is to fix that. Experts and researchers have told me that this is something that will take time, but we have made tremendous progress in a short time.

The two doctors we work with have had tremendous success in helping visual snow patients treat some of their symptoms with Neuro-Optometric Rehabilitation Therapy, or NORT. It addresses visual symptoms and some non-visual symptoms as well.

Wearing FL-41 tinted glasses can also help.

Read the original article on Business Insider

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