Backstory

By Sierra Domb, Founder Visual Snow Initiative

Close To Home

Three years ago, I suddenly began seeing hundreds of illuminated tiny dots in my field of vision. They were present 24 hours a day irrespective of whether my eyes were open or closed. In addition to seeing these dots, I started experiencing several other frightening visual symptoms. These included: halos around bright objects, floaters, randomly occurring bright flashes, afterimages, trailing, light sensitivity, and difficulty seeing at night. Also, I noticed that whenever I looked at the sky or any vibrant blue/white background, the unceasingly visible dots in my visual field became significantly more prominent.

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 to the physicians what I was experiencing (in great detail), through verbal explanation and by drawing pictures of the images. A multitude of eye tests 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.  Shortly thereafter, I was formally diagnosed with Visual Snow.

Struggling For Answers

I was determined not to let Visual Snow stifle my ambition. I did not want this circumstance to turn me into a person I simply wasn’t. But trying to balance coping with Visual Snow in conjunction with my academic/occupational pursuits 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. I had to “work around” the Visual Snow.

While experiencing these visual symptoms on their own was absolutely devastating, not having any answers as to what 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. This was incredibly reassuring. However, it was strikingly baffling to me that after seeing so many physicians in numerous, different areas of expertise that not one of them knew of Visual Snow.

It was then that I realized the answer to this predicament: You cannot offer a solution for anything if you are not even aware it exists. We are determined to change that by bringing Visual Snow to the forefront.

Answers

The speakers at the Visual Snow conference, Dr. Peter Goadsby, Dr. Victoria Pelak, Dr. Owen White, Joanne Fielding, Dr. Yasser Kahn, James Fulton, Matthew Renze, and I are both passionate and determined to help find a solution. There is currently no magic bullet, but there are many ways to mitigate the impact of Visual Snow. While answers are being sought, we want you to know how you can live and enjoy your life without fear. The Visual Snow Initiative continues to provide The Cure of Understanding.

Stay Up To Date With The Latest Updates and Event Info

Join our mailing list to receive the latest news and updates from the Visual Snow Initiative team.  We'll include updates on research, strategies to spread awareness, and upcoming events.

You have Successfully Subscribed!