The Visual Snow Initiative (VSI) is pleased to share an important milestone for the Visual Snow Syndrome community. Visual Snow Syndrome (VSS) now has a dedicated disease page on the Genetic and Rare Diseases (GARD) Information Center, a public health resource managed by the National Center for Advancing Translational Sciences (NCATS), part of the National Institutes of Health (NIH).
The dedicated Visual Snow Syndrome page provides patients, families and medical professionals with centralized information and resources about VSS, including its symptoms, healthcare specialists, patient organizations and research opportunities.
Symptoms and Frequency
One of the most extensive portions of the GARD page is its Symptoms section. GARD emphasizes that symptoms and their intensity can vary from one person to another and notes that its database may not include every possible symptom.
In addition to the defining visual snow described in the disease summary, GARD currently identifies 24 phenotypic and clinical features associated with Visual Snow Syndrome, including:
- Anxiety
- Bipolar affective disorder
- Brain fog
- Depersonalization
- Depression
- Derealization
- Diminished ability to concentrate
- Entoptic phenomena
- Fatigue
- Irritability
- Migraine
- Migraine with aura
- Neck pain
- Nyctalopia, or poor night vision
- Orthostatic tachycardia
- Paresthesia
- Photophobia
- Photopsia
- Postural instability
- Sleep disturbance
- Tinnitus
- Tremor
- Vertigo
- Vitreous floaters
The page also provides additional information for each symptom, including its medical term, description, synonyms and reported frequency. Frequency categories include very rare, occasional, frequent, very frequent and obligate, indicating how commonly a particular feature has been reported among people with the condition. This frequency refers to the proportion of people with the condition who have a particular symptom rather than how often an individual experiences that symptom. The symptoms can also be filtered and sorted directly on the GARD website.
Importantly, GARD states that this information comes from the Human Phenotype Ontology (HPO). HPO provides standardized terminology for describing phenotypic and clinical features associated with diseases, giving patients, clinicians and researchers a consistent way to refer to the different features associated with Visual Snow Syndrome.
What the GARD Page Includes
Beyond information about VSS and its symptoms, the page includes several sections and resources for patients, families and medical professionals.
- Disease Information provides an overview of Visual Snow Syndrome, including its defining features, diagnosis and what is currently known about its cause.
- Navigating Health Care Decisions provides information for people seeking a diagnosis, second opinion or appropriate medical care.
- Your Health Care Team explains which healthcare professionals may be involved in VSS care, including ophthalmologists and neuro-ophthalmologists.
- Multidisciplinary Care Centers provides information about centers where specialists from different areas may work together on complex cases.
- Rare Disease Experts includes resources for finding professionals with knowledge of VSS, including the Visual Snow Initiative’s Physicians & Specialists Directory.
- Find Your Community includes patient organizations and support resources, including the Visual Snow Initiative.
- Participate in Research provides information about clinical studies, ClinicalTrials.gov, ResearchMatch and other ways patients can learn about research opportunities.
Visual Snow Initiative Listed as a Patient Organization and Resource for VSS Experts
The Visual Snow Initiative is listed by GARD as the leading patient organization for Visual Snow Syndrome. Through its List of Experts, visitors are directed to the Visual Snow Initiative’s Physicians & Specialists Directory.
VSI’s directory helps people find medical professionals around the world who have knowledge or experience relating to Visual Snow Syndrome, including neurologists, neuro-ophthalmologists, ophthalmologists, neuro-optometrists, optometrists and other professionals.
This allows people who find information about Visual Snow Syndrome through GARD to also access VSI resources and connect with medical professionals familiar with the condition around the world.
Why This Is Important
People experiencing Visual Snow Syndrome may not know what their symptoms are called, which type of medical professional to see, or where to find someone familiar with the condition.
Having Visual Snow Syndrome featured on GARD gives patients and families another resource where they can learn about the condition, review associated symptoms, understand which medical specialists may be involved in their care, find patient organizations and explore research opportunities.
For medical professionals who may be less familiar with VSS, the page provides an overview of the condition, standardized symptom terminology, information about associated features, and links to additional resources.
The page also connects visitors directly with the Visual Snow Initiative and its Physicians & Specialists Directory, providing another pathway to VSS-specific information and medical professionals familiar with the condition.
The inclusion of Visual Snow Syndrome on an NIH-managed public health information resource expands access to information about the condition for patients, families, researchers and healthcare professionals.
The Visual Snow Initiative will continue working to improve awareness, education, research and access to resources for people affected by Visual Snow Syndrome worldwide.