By Sierra Domb, Founder of the Visual Snow Initiative (VSI)
After years of medical testing & unknowns, Sierra finally learned she had Visual Snow Syndrome! But most of the medical community still knew nothing about the condition and patients weren’t receiving proper help. She and her team are determined to change that by bringing Visual Snow to the forefront through establishing worldwide awareness, education, research, resources, and understanding. Read the full story below.
Close to Home
One day, I suddenly began seeing a layer of “static” over my vision. This bilateral “static” was comprised of countless illuminated tiny dots and flashing lights. They were present 24-hours a day in my visual field, irrespective of whether my eyes were open or closed. Additionally, I began experiencing several other frightening visual symptoms. These included: palinopsia, floaters, randomly-occurring bright flashes, afterimages, entoptic phenomenon, light sensitivity, and difficulty seeing at night. Non-visual symptoms ensued thereafter, ranging from tinnitus to widespread muscular pain.
My family and I visited dozens of doctors in search of answers, tirelessly attending appointments. Over an 18-month timespan, I was seen by a number of neurologists, ophthalmologists, as well as doctors with expertise in subspecialties of the eye. I would attempt to describe what I was experiencing to the physicians in great detail, through verbal explanation and by drawing pictures of the images. A plethora of uncomfortable eye exams were performed. The results all came back “normal”, so additional testing was recommended. I went on to complete CT scans, MRIs, and PET scans. But the findings of those tests all came back “normal” as well.
Struggling for Answers
Nonetheless, I was determined not to let these symptoms stifle my ambition; I did not want this circumstance to turn me into a person I wasn’t. But trying to balance coping with these symptoms in conjunction with my academic & occupational pursuits/responsibilities became a “one step forward, two steps back” dilemma. Unfortunately, the symptoms proved too debilitating. There was no choice left but to severely alter my life. Life as I knew it changed dramatically and I had “work around” my symptoms.
While experiencing these symptoms on their own was absolutely devastating, not having any answers as to what was going on or why it was happening was even worse. It was only after scouring the internet for elucidations that I “discovered” Visual Snow. Descriptions, images, and explanations of the condition (as well as its corresponding symptoms) matched exactly what I was going through. I also saw there were others just like me struggling to adapt to a life of seeing differently. After years of agonizing testing, I finally got in touch with a doctor, whose Visual Snow research was published online; he formally diagnosed me with Visual Snow Syndrome.
It was incredibly reassuring to receive an official diagnosis and know that I wasn’t alone. However, it was striking to me that after seeing so many physicians in numerous areas of expertise, not a single one of them had known what Visual Snow Syndrome was.
It was then that I realized the answer to this predicament: the medical community cannot offer a solution for anything if it is not even aware it exists. That’s why I founded the Visual Snow Initiative (VSI). We are determined to change that by bringing Visual Snow to the forefront.
Getting Answers & Giving Hope
The VSI, its team of medical experts & scientific researchers, and I all share a mutual passion for helping Visual Snow patients. We are determined to learn more about Visual Snow Syndrome and find solutions for this condition. There are many ways to mitigate the impact of Visual Snow. While answers are being sought, we want you to know that you can live and enjoy your life without fear. As we focus on awareness, education, research, and potential treatments, the Visual Snow Initiative continues to provide “The Cure of Understanding”.