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Help Your Child with Visual Snow Syndrome

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Visual Snow Syndrome (VSS) is a neurological condition that affects children around the world.

Despite its impact, VSS is often misdiagnosed and misunderstood, leaving many children and their families searching for answers.

Pediatric cases have been reported across the globe, and our team has connected with individuals affected by VSS in over 93 countries — with the youngest reported case at just 8 years old and an average reported age of 13 years.

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Founded by Sierra Domb, the Visual Snow Initiative (VSI) is a nonprofit organization dedicated to raising global awareness, advancing research, providing educational resources, advocating for patients, and supporting treatment development for VSS.

To better support children and families, VSI has launched a dedicated resource designed to help children, parents, and caregivers to understand and manage Visual Snow Syndrome.

VSI 4 Kids:
A New Resource for Children with Visual Snow Syndrome

The Visual Snow Initiative (VSI) is excited to launch VSI 4 Kids, a first-of-its-kind resource dedicated to helping children and youth understand and manage Visual Snow Syndrome (VSS).

In this video, our Director of Research, Vanessa Mora, and Director of IT, Mehrad Mazaheri, explain the VSI 4 Kids project and how we plan to expand this resource to better support children, parents, and healthcare professionals.

Additional Resources for Parents

Understand Visual Snow Syndrome

Diagnostic Criteria

If your child is experiencing unexplained visual disturbances, our Diagnostic Criteria can help identify symptoms associated with Visual Snow Syndrome (VSS).
If you suspect your child may have VSS, please share this Diagnostic Criteria with their physician to assist with proper diagnosis.
Many healthcare professionals have limited knowledge about VSS, and referring them to our website can help spread awareness and education within the medical community.
Diagnostic Criteria

Doctors Who Can Help

The Visual Snow Initiative (VSI) provides a Doctor Directory listing physicians knowledgeable about Visual Snow Syndrome (VSS). 

If your child has VSS, finding the right specialist can make a difference in understanding their condition and managing symptoms.

Explore the VSI Doctor Directory to find a healthcare professional who understands Visual Snow Syndrome and can help guide you and your child toward the right support.
Find a Doctor

Managing Visual Snow Syndrome in Children

Every child experiences Visual Snow Syndrome (VSS) differently, so a personalized approach to symptom management is essential. While there is no cure, certain treatments and lifestyle adjustments may help improve your child’s comfort and quality of life. Our Managing VSS page provides parents with information on research-backed treatment options, both noninvasive and pharmacological, to help guide discussions with healthcare professionals. By working with a doctor, you can create a care plan tailored to your child’s specific symptoms and needs.
Treating Visual Snow

Patient Guide

Your child’s Visual Snow Syndrome (VSS) diagnosis may feel overwhelming, but you’re not alone. Our VSS Patient Guide is here to help you understand what this means and what steps to take next.

This guide explains what VSS is and provides management tips to help ease symptoms.

Additionally, you’ll find guidance on connecting with a supportive community of individuals living with VSS, as well as ways to raise awareness and advocate for better understanding and research.
VSS Patient Guide

See What Your Child Sees

  • Click to launch Visual Snow Simulator (Desktop Only)

Understanding what your child is experiencing can be challenging. Our Visual Snow Simulator allows you to adjust settings and see different variations of Visual Snow Syndrome symptoms. 

How It Helps:

  • Helps parents understand their child's visual experience.
  • Can be shared with doctors to better explain symptoms.
  • A useful tool for discussing potential care options.

Frequently Asked Questions (FAQ)

Have questions about Visual Snow Syndrome (VSS) or the Visual Snow Initiative (VSI)? 

Our FAQ page provides answers to common concerns about VSS, its symptoms, diagnosis, and available resources.

FAQ

Which type of doctor should I see for Visual Snow Syndrome?

Neuro-ophthalmologists and neurologists are best equipped to address VSS, including some ophthalmologists, optometrists, neuro-optometrists, and vision therapists who are trained in the management/treatment of VSS symptoms.

Can Visual Snow Syndrome be hereditary?

While the exact cause of Visual Snow Syndrome is unknown, a genetic component is possible. There have been some reports of VSS running in families, including cases of VSS in monozygotic twins. In clinical research involving patients diagnosed with VSS, 21% reported a family history of similar visual disturbances. However, more research is needed to fully understand the hereditary aspects of VSS. The Visual Snow Initiative team is highly interested in exploring this further. Advancing our understanding of VSS is imperative, including genetic components/hereditary factors.

Does Visual Snow Syndrome get worse during your period?

Many teenage girls with Visual Snow Syndrome (VSS) notice their symptoms may get worse at certain times during their cycle. Hormonal changes may lead to changes in mood and sleep. Stress, inflammation, and pain sensitivity can also play a role. However, not everyone with VSS experiences these changes, and symptoms can vary.

Learn More on the VSI Website

For more information, visit the Visual Snow Initiative website, where you can find the latest news, research, and projects dedicated to understanding, treating, and finding a cure for Visual Snow Syndrome (VSS).

  • Stay updated on new studies and expert interviews
  • Explore ongoing initiatives and global efforts to improve VSS awareness and care
  • Access more resources and donate to the cause to help children around the world
Visual Snow Initiative

ABOUT US

The Visual Snow Initiative (VSI) is a nonprofit organization dedicated to global awareness, education, resources, patient advocacy, treatment development, and research for VSS. To date, our team has heard from people affected by VSS in over 93 countries. Together, we can find solutions!

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  • Hello 👋, how can I help you today? Please note that the answers, content, and guidance provided by our AI Chatbot are for educational and informational purposes only and do not constitute providing medical advice or professional services. While we strive to provide accurate information through the AI chatbot, we cannot guarantee the accuracy, completeness, or up-to-date nature of the information provided. We encourage you to use responses as a starting point, and those seeking personal medical advice should consult with a licensed healthcare professional. If you think you may have a medical emergency, call 911 or go to the nearest emergency room immediately.
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