New Video Chat Support Group for Visual Snow Syndrome
The Visual Snow Initiative (VSI) and the Ancan Foundation have partnered together to provide accessible face-to-face support and interpersonal connection for the Visual Snow Syndrome (VSS) community by hosting virtual, peer-moderated support groups.
There are millions of people around the world affected by VSS, but they seldom have the opportunity to meet someone with the condition in their daily life. Finding someone with VSS in their 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 individuals 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.
The medical community’s historic marginalization of VSS patients coupled with VSS symptoms, such as visual snow/static and derealization/depersonalization, contribute to feelings of isolation and separation from the world.
From Pain to Purpose
Sierra Domb, the Founder of VSI, knows this struggle firsthand. 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 she began meeting other VSS patients and VSS-informed medical professionals from around the world.
Sierra wants to provide assurance and comfort to others with VSS that they are not alone in their struggles. Dedicated to extending global support and understanding to others with VSS, in partnership with AnCan, VSI has now created the first-ever monthly video chat support group for VSS.
While having VSS may not be the exact same experience for everyone, many patients often share similar journeys and symptoms. Through these monthly video chats, people with VSS and their loved ones worldwide have the opportunity to connect remotely, relate, and learn from each other face-to-face to build further support and understanding.
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.
Moderated by Individuals with Visual Snow Syndrome
Our VSS virtual support group is moderated by Leah Woods, Brianna Bang, and Amber Cote, who also have VSS.
Video Chat or Call-Ins
Joining our virtual support group is easy and accessible. You can participate via video chat to connect face-to-face with others, or opt for a call-in option if you prefer. (If you do call-in, we kindly ask that you display your first name in the room; that way, we know who is speaking and can address you properly.)
Important Note Before Joining:
Please be respectful of everyone in the group and their feelings/experiences. Bullying, harassment, and disparaging language are not allowed. Thank you!
Join the Group
If interested in joining the virtual support group, please visit Ancan for more information.
Next Group Session: August 19th at 8PM (EST)
After August, group sessions will be held the first Monday of every month at 8PM (EST)
You Are Not Alone
While we may sometimes feel alone in our respective local communities, together in this virtual support group, we can unite as people affected by VSS from around the world.
We Hope to See You There!
Thank you for supporting VSI’s mission to make the world a more accessible, supportive, and understanding place for everyone affected by VSS.
