Visual Snow Initiative
COLLABORATE, EDUCATE, AND CURE
Visual Snow Syndrome (VSS) is a neurological disorder that impacts an individual’s vision, hearing, cognition, sensory processing, and quality of life. The defining characteristic of VSS is seeing visual snow, which can be described as seeing static, flickering dots, and flashing lights 24/7 (with your eyes both open and closed). Some describe it as trying to see in the middle of a snowstorm or through a snow globe that has been shaken up. VSS entails more than just seeing visual snow. People with VSS also commonly experience many other debilitating visual and non-visual symptoms. VSS symptoms affect an estimated 2-3% of the world’s population.
The Visual Snow Initiative (VSI) is a nonprofit organization dedicated to global awareness, education, resources, patient advocacy, treatment development, and research for VSS. Our team has heard from people affected in over 93 countries. Together, we can find solutions.
What is Visual Snow Syndrome?
If you have never heard of Visual Snow Syndrome (VSS) before or if you have VSS and find it difficult to explain your condition to others, this video is for you. Physicians may also show this video to their patients or colleagues to help them better understand VSS. VSS is a complex condition, but the explanation of it does not have to be.
DONATE
Support VSS research, treatments, and efforts to find a cure.
LEARN
Use our diagnostic tools and educational resources to learn about VSS.
JOIN THE CAUSE
Share your journey and raise awareness for VSS.
Visual Snow Symptoms
Visual Snow Syndrome (VSS) can affect people of all ages and backgrounds. VSS encompasses an array of visual and non-visual symptoms.
Visual & Non-Visual Symptoms
- Visual snow (dynamic snow-like dots across the entire visual field)
- Palinopsia (continuing to see an image after the stimulus has been removed)
- Photopsia (flashes of light or small floating objects)
- Enhanced entoptic phenomena (excessive floaters and rings of light shooting across the entire visual field, more noticeable when looking at bright surfaces such as the blue sky)
- Photophobia (sensitivity or intolerance to light)
- Nyctalopia (impaired night vision)
- Diplopia (double vision)
- Other visual phenomena, such as starbursts and halos
- Tinnitus (ringing or buzzing noise in the ears)
- Anxiety
- Depression
- Depersonalization (feeling detached from yourself)
- Frequent migraines
- Brain fog and confusion
- Dizziness
- Nausea
- Paresthesia (tingling “pins-and-needles” sensations, commonly in the arms, hands, legs and feet)
- Insomnia and other sleep-related issues
Latest VSI Progress/Updates
Our Founder, Sierra, shares a recap of the latest VSI progress and updates.
Topics include:
- New research and treatment developments
- VSI’s efforts to get an ICD code for Visual Snow Syndrome
- Our new website
In case you missed any of these updates on our website or social media, feel free to watch for a summary of what we’ve been and will be working on.
Recent Highlights
VSI Virtual Summit
The Visual Snow Initiative invites you to learn about the Tsang/Shidlofsky Visual Snow Protocol, Neuro-Optometric Rehabilitation Therapy, and the latest advancements in treating VSS symptoms in this free virtual event.
For more information, please see the full study, “The Efficacy of Neuro-Optometric Visual Rehabilitation Therapy in Patients with Visual Snow Syndrome”, published in Frontiers.
The Visual Snow Conference
One of the earliest efforts of the Visual Snow Initiative was the establishment of the first Visual Snow Conference in history. Held on May 5th, 2018, at UCSF, this free summit brought together patients, their families, and Visual Snow experts from around the world. Organizers and those involved sought to raise awareness, share the current body of research, provide education, offer resources, and foster understanding.
NEWS & RESEARCH
Our team shares the latest news regarding the Visual Snow Initiative, research/project updates, as well as any additional information related to our global efforts to better understand and treat Visual Snow Syndrome.
PHYSICIANS & SPECIALISTS
VSI’s Physicians and Specialists Directory is comprised of various medical professionals. They have helped members of the VSS community, who have then referred them to us and maintained they have knowledge of Visual Snow Syndrome.
VISUAL SNOW WARRIORS
These inspiring individuals living with Visual Snow Syndrome share their experiences and how they try to overcome its symptoms.
Our Collaborators
Some of the institutions we have worked with and continue to work with include but are not limited to:
Massachusetts Institute of Technology
Monash University
Moorfields Eye Hospital NHS Foundation Trust
University of Bern
King’s College
University of California, Los Angeles
University of Colorado
Imperial College
McGill University / Université McGill
NIHR National Institute for Health and Care Research
Binghamton University
The Initiative
The Visual Snow Initiative (VSI) was founded by Sierra Domb, who struggled, as many did, with the lack of information and resources available to those with Visual Snow Syndrome (VSS). It was difficult for VSS patients to understand their condition and for physicians to help them. Sierra realized that further research, education, and solutions for VSS symptoms were necessary in order to reduce the high frequency of unnecessary medical testing, marginalization, misdiagnosis, trauma, and isolation that many people with VSS endure (but shouldn’t have to).
VSI is a nonprofit organization dedicated to awareness, education, resources, patient advocacy, treatment development, and research for VSS. Our team consists of passionate VSS experts, physicians, scientists, and researchers from around the world who are dedicated to creating and finding solutions. With your generous contribution, we gain the ability to collaborate on a global scale and continue to produce new research and treatments that can help those suffering from VSS.
Latest Updates
Here, our team will share the latest news regarding the Visual Snow Initiative, research/project updates, as well as any additional information related to our global efforts to better understand and treat Visual Snow Syndrome.
Medical Professional Testimonials
Join Our VSS Community
“I was determined not to let Visual Snow Syndrome stifle my ambition. I refused to let this circumstance turn me into a person I wasn’t.”
