From Uncertainty to Progress and Hope
Historically, it has been challenging for people with Visual Snow Syndrome (VSS) to receive an accurate diagnosis. Due to its visual symptoms, many people with VSS and their physicians thought their eyes were the origin of the problem. But when referred to optometrists and ophthalmologists (eye doctors), who would test for abnormalities, their results typically came back “normal”. That is because VSS is a sensory processing disorder that originates in the brain, not the eyes.
Neuro-ophthalmologists and neurologists are best equipped to address VSS, including some ophthalmologists and optometrists who are certified in the management/treatment of VSS symptoms. But previously, the condition struggled to gain clinical acceptance. Most physicians had never heard of VSS. Among those who had, some rejected its legitimacy. They insisted that VSS was simply a form of migraine aura (despite VSS patients also experiencing other debilitating visual and non-visual symptoms that were not consistent with migraine aura). Other physicians already knew that VSS was a real, distinct medical condition and wanted to help their patients. But without funding for further research, awareness, education, and treatment options for VSS, solutions would not be possible.
Today, VSS is recognized as a legitimate clinical and scientifically-measurable neurological disorder. Frequency of misdiagnosis has reduced and there is more awareness being generated for VSS than ever before. There is active, global research for VSS. For the first time ever, noninvasive and viable treatment options are available, as well as diagnostic tools and resources. Together, we are making significant progress. See sections below for more information.
The Progress
VSS: At a Glance
- Visual Snow Syndrome (VSS) is a neurological disorder that affects sensory processing; it is not a structural issue with the eyes.
- VSS entails both visual and non-visual symptoms.
- Individuals with VSS process visual information abnormally.
- People from around the world of all ages are affected by VSS daily.
- VSS symptoms can be experienced from birth or at a later point in life.
- People of all ages and backgrounds can be affected.
- VSS symptoms affect an estimated 2-3% of the world’s population.
Challenges with Diagnosing VSS
- Many VSS symptoms can be attributed to other conditions, causing confusion and misdiagnosis.
- Some patients were led to believe that they were going blind, their symptoms would worsen, or their vision was deteriorating. Researchers now know VSS does not cause blindness nor is it degenerative.
- VSS is often mistaken for migraine aura or HPPD, which are separate entities with different pathogenesis.
- Patients were often not believed, and some even faced stigma and dismissal. VSS does not cause blindness nor is it degenerative.
- It is not uncommon to see temporary visual snow, or static, especially under specific lighting conditions.
- However, seeing these images constantly, with your eyes both open and closed, is a symptom unique to VSS.
- Prior to the publication of scientific research, some thought VSS was a “supernatural” ability.
Advancements and Milestones
- VSS is now recognized as a distinct, legitimate clinical and scientifically-measurable neurological disorder.
- VSS is now acknowledged by medical and scientific institutions, such as Mayo Clinic, Cleveland Clinic, Healthline, NORD, NIH, PubMed, and Frontiers.
- The rate of misdiagnosis for VSS has significantly decreased.
- By funding and facilitating research, the publication of clinical studies and scientific evidence for VSS has substantially increased.
- Global experts are actively collaborating to study and find solutions for VSS.
- More doctors around the world have become aware and educated about VSS than ever before. They are interested specfically in helping VSS patients.
- Physician-patient communication regarding VSS can be more effective.
- There are now resources, educational content, and diagnostic tools to help people with VSS and their physicians.
- Viable and non-invasive treatment options for VSS that never existed are now available.
- Thus far, the VSI team has heard from people with Visual Snow in over 93 countries affected by VSS.
- Global awareness as well as clinical and public interest for VSS is growing daily.
