VISUAL SNOW SYNDROME
Video Chat Support Group for Visual Snow Syndrome
AnCan and the Visual Snow Initiative (VSI) have partnered together to provide face-to-face support and interpersonal connection for the Visual Snow Syndrome (VSS) community by hosting virtual, peer-moderated support groups. After years of not knowing another person with her condition, let alone a doctor who understood it, feelings of frustration and solitude were replaced with catharsis and relatability as Sierra Domb, VSI’s Founder, began meeting other VSS patients and VSS-informed medical professionals from around the world. She wants to provide assurance and comfort to others with VSS that they are not alone in their struggles. While having VSS may not be the exact same experience for everyone, many patients often share similar journeys and symptoms. Through our monthly video chats, people with VSS and their loved ones worldwide have the opportunity to connect, relate, and learn from each other face-to-face to build further support and understanding.
There are millions of people around the world affected by VSS, but we all seldom have the opportunity to meet someone with the condition in our daily life. Finding someone with VSS in your immediate area can be challenging. Many people with VSS, especially those who are born with it, may not realize they have a neurological disorder. Moreover, some people who are aware of their symptoms may have never heard of the term, “Visual Snow Syndrome”, and have yet to discover that their condition has a name. Symptoms of VSS, such as visual snow/static and derealization/
Welcome to Everyone Affected by Visual Snow Syndrome
Our virtual VSS support group focuses on not just the physical symptoms of VSS, but how it can affect your mental health as well. Run by individuals with VSS who understand our struggles, this is a safe space for people of all ages affected by VSS (whether a patient or a loved one) to relate to one another and share experiences, tips, or other important topics. Having VSS can be isolating and it may be hard to find someone else with the condition in your area. We want to remind you that you are not alone in this. We can communicate together face-to-face, support each other, gain insights from one another’s experiences, and learn more about the diverse global impact of VSS.
When and Where
Our video chat virtual group meets on the 1st Monday of each month at 8 pm Eastern, 7 pm Central, 6 pm Mountain and 5 pm Pacific in the AnCan Schmier Room. You can join online or by phone at +1 646 749 3127 Access # 656-182-845. Click here for more information and other Country Access codes.
Video Chat or Call-Ins
For this virtual VSS support group, you will be able to video chat with others who are affected by VSS and their loved ones. If you do not feel comfortable with video, you also have the option to call-in. If you do call-in, we kindly ask that you share your first name in the room; that way, we know who is speaking and can address you properly.
Our Moderators
Our VSS virtual support group is moderated by Leah Woods, Brianna Bang, and Amber Cote, who also have VSS. You can learn more about them by visiting their profiles below.
Important Note
Please be respectful of everyone in the group and their feelings/experiences. Bullying, harassment, and disparaging language are not allowed. Thank you!
What is Visual Snow Syndrome?
Visual Snow Syndrome (VSS) is a neurological disorder that impacts an individual’s vision, hearing, cognition, sensory processing, and quality of life. The brain of an individual with VSS processes visual information abnormally, as well as other sensory information. Visual Snow (VS), is the primary symptom of the condition of which it is also named after. VS entails seeing snow-like static throughout the entire visual field (with your eyes open and closed). However, the condition also encompasses an array of other debilitating visual and non-visual symptoms.
VSS symptoms impact an estimated 2-3% of the world’s population. People of all ages and backgrounds worldwide are affected by VSS daily. Some experience symptoms since birth while others experience the sudden onset of the condition. The debilitating nature of VSS symptoms coupled with the medical community’s historic marginalization, misdiagnosis, and mistreatment of VSS patients can have a profound, devastating impact on their mental health.
For more information about VSS, research, resources, and more, please visit visualsnowinitiative.org.
About Visual Snow Initiative
The Visual Snow Initiative is a nonprofit organization dedicated to global awareness, education, resources, patient advocacy, treatment development, and research for Visual Snow Syndrome.
Upcoming Visual Snow Syndrome Groups
All of our groups are FREE...
and you can drop in at any time!
Meet our moderators
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AnCan does not provide medical advice – we do empower you to manage your own care.
Our calls are recorded and posted on this website for later listening; please note we are a peer-to-peer support group and not subject to HIPAA compliance.
