Backstory

By Sierra Domb, Founder of the Visual Snow Initiative (VSI)

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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 unceasing 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 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

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 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 that not a single one of them had known what Visual Snow was.

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.

Getting Answers, Giving Hope

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 all passionate and determined to help find a solution 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 pursue the development of potential cures/treatments, the Visual Snow Initiative continues to provide “The Cure of Understanding”.

 

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New Visual Snow Syndrome Study!

The VSI has been working with Dr. Tsang in California and Dr. Shidlofsky in Texas. Both doctors have been highly successful in reducing, and in some cases, eliminating symptoms of Visual Snow Syndrome in their patients. When we learned that their philosophies and methods were strikingly similar and effective, the VSI put them in contact with each other. They are now collaborating on an enhanced VSS protocol. They will be accepting new patients for this study.

Today, the VSI will be releasing a series of informational videos on our YouTube channel in which Dr. Tsang and Dr. Shidlofsky discuss their experience in treating VSS. The VSI will also post video testimonials from their patients. We are enthusiastic and optimistic to share Dr. Tsang’s and Dr. Shidlofsky’s insights with the VSS community. If you would like to make an appointment with either Dr. Tsang or Dr. Shidlofsky, their contact information will appear at the end of each video. Watch the videos here: http://bit.ly/VSIYouTube.

We recognize that the majority of people with VSS cannot travel to California or Texas to take part in this study. Therefore, once the study has concluded, Dr. Tsang and Dr. Shidlofsky have agreed to make a series of instructional videos that will show their step-by-step protocol, which can be done at home. They will offer suggestions and techniques that will allow the use of household items versus in-office medical equipment. The VSI will also make these videos available.

We would like to thank Dr. Tsang, Dr. Shidlofsky, Kelsey NaPier, and Michael Neustifter for their kind and generous contribution to the VSS community.

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