This as-told-to essay is based on a discussion with Sierra Domb, founder and CEO of the Visual Snow Initiative, about her journey with visual-snow syndrome – a neurological condition where people see tiny, snow-like flecks in their vision. It was modified for length and lucidity.
One day in 2015, as I was going to university, my vision went black. The vision of mine returned moments later, but the planet didn’t look exactly the same after that.
It was as a veil was covering my eyes – like I was seeing the world through an analog Tv static. More symptoms began, including severe light sensitivity and palinopsia, and when you carry on and see a picture after it is no longer there. I additionally experienced ringing in the ears and recurring migraines.
From there, I went to some of probably the most well-known medical institutions in the country. After about 18 months of uncertainty and looking at numerous doctors, I was left without an answer as to that which was going on with me.
Then, I discovered the name visual snow syndrome in an internet medical journal. The symptoms described in the article matched the symptoms of mine exactly. I quickly contacted the doctor who published the article, and he later diagnosed me with visual-snow syndrome.
Visual-snow syndrome is a neurological condition with a constellation of non-visual and visual symptoms. The hallmark symptom is seeing fixed and clashing lights and flickering dots that obstruct your vision 24/7, whether your eyes are open and shut.
I learned that this syndrome was not well known within the medical community.
Lots of individuals like myself were left to deal with this condition in private. A lot of people use the internet and start speculating about what is wrong with them and make an effort to diagnose themselves.
Individuals like me were being denied education and marginalized due to insufficient awareness. To deal with this, I set up the Visual Snow Initiative, a nonprofit that raises awareness, educates, offers information and helps with globally research as well as potential treatments for Visual Snow syndrome.
We created the pioneer diagnostic criteria for visible snow syndrome, so anyone is able to show it to their physician to establish a potential diagnosis. We also have developed an international directory of specialists and physicians with expertise in visual snow .
Oftentimes, people with visual-snow syndrome go to an eye doctor.
They go to an ophthalmologist or an optometrist, which are physicians that focus on the eye, and their examination results come back normal, since there is absolutely nothing wrong structurally with their eyes.
The latest studies have discovered the visual snow syndrome is really a neurological disorder, meaning that your perception is really being impacted by the processing centers within your head.
It’s become apparent that this is not as rare as people initially thought.
I did not realize till recently that there have been other individuals that suffered from visible snow syndrome, when I first encountered it myself. Scientists have found it might impact an estimated 2 percent to 3 % of Earth’s population. Although that percentage might seem small, consider that there’re huge numbers of people affected around the world.
In addition, my team and I’ve spoken with a huge number of people in more than 93 countries with visual snow. Individuals of any age and from all walks of life could be and are impacted every day.
A lot of people with visible snow have no clue that they’ve symptoms, particularly every time a large population is born with it. They appear to think that everybody sees the world in this manner. These ailments might be underreported.
Everyone’s visual snow is different.
Individuals with visual snow might experience all or several symptoms, such as light sensitivity and tinnitus. The degree of these signs, from mild to crippling, can differ.
Experiencing this condition is a different experience for everybody.
When I initially encountered visual snow , it had been crippling. As time passes it’s become better. For some individuals it is mild from the beginning, and it does not affect their everyday life, and for many people it can. A lot of operate normally, and for other people it can be life changing.
Regardless if your eyes are wide open or closed, the defining characteristic of visual snow syndrome is the fact that everybody sees static constantly.
People might link their visual snow to a specific incident.
Could it be likely that your visual snow was a result of a concussion? It was X? Was that Y?
There is been plenty of speculation regarding the real cause, and the simple fact is the fact that there’re a lot of different factors that individuals attribute to their visible ice, and it can be hard to identify across the board something which everybody has in common, particularly when you’ve individuals that’re born with something, and then individuals who get it at a random point.
Although there’re typical characteristics across the board, that doesn’t imply that everybody with visual snow syndrome has the exact same experience or was brought on by the very same trigger.
To date, researchers are not aware of a cure for visual-snow syndrome.
I will do my very best to correct that with the Visual Snow Initiative. I was told by researchers and experts which this’s something that is going to take time, but we have made great strides in a short time period.
A couple of of the doctors we work with have had great success with Neuro Optometric Rehabilitation Therapy (NORT) for dealing with visual snow individuals. Additionally, it addresses a few of the non-visual symptoms.
Having FL-41 tinted glasses may also be beneficial.
This article was originally published by Business Insider.