VISUAL SNOW SYNDROME

 

Visual Snow Syndrome Virtual Support Group: What to Expect

 

The Visual Snow Initiative (VSI) and the AnCan Foundation have partnered together to create the first video chat support group for individuals affected by Visual Snow Syndrome (VSS). This peer-moderated group offers a welcoming safe space where people with VSS and their loved ones can connect face-to-face, share experiences, and support each other in a casual, friendly virtual environment.

The support group is designed to help individuals with VSS feel understood and less isolated by connecting them with others who share similar experiences. The group also aims to foster connections, providing participants with the opportunity to build friendships and share encouragement in navigating the challenges of VSS. Whether you are a VSS patient or a loved one seeking understanding, advice, or simply someone who can relate, this space offers an opportunity to engage in open dialogue about life with VSS, learn from others on similar journeys, and receive or offer emotional support.

 

Key Features:

  • Peer Moderation: The group is moderated by individuals with VSS, offering a relatable and compassionate atmosphere. While they are not healthcare professionals, they are here to help foster meaningful connections, provide encouragement, and offer emotional support to group members
  • Casual, Friendly Conversations: The focus is on informal discussions where participants can share personal experiences, provide mutual support, and offer encouragement to one another.
  • Face-to-Face Connection: Whether through video chat or call-in, participants can engage in real-time conversations with others who truly understand their experiences. This group is a great place to meet people, make friends, and feel less isolated.
  • Open to All: Whether you’re a patient or a loved one, everyone affected by VSS is welcome to join. This is a non-judgmental, supportive space where all are encouraged to participate and build relationships, or listen if they prefer.

The virtual VSS support group meets monthly, providing a consistent opportunity to connect with a global community of individuals on similar journeys. It is designed to be a safe space for learning, relatability, building friendships, and finding solidarity, while also offering encouragement and mutual support in coping with VSS.

 

 

Support Group Format

 

At the start of each session, moderators will ask if anyone would like time to speak. If you wish to share, please let the moderators know, and they will ensure everyone has a chance to participate in an orderly manner. Each participant will be called upon one-by-one, so we kindly ask that you wait for your turn.

If you join after the session has begun, the moderators will ask if you would like to speak and will incorporate you into the speaking order. Please be patient, as we give priority to those who arrived earlier.

We appreciate everyone’s cooperation in maintaining a respectful and supportive environment.

 

 

Group Disclaimers & Clarification of Purpose

 

The Visual Snow Initiative and AnCan’s Virtual Support Group is not a substitute for professional medical advice, diagnosis, or treatment. It is not intended for health-related inquiries or medical guidance, which should be directed to a licensed healthcare provider. Moderated by individuals with Visual Snow Syndrome (VSS), this group is intended as a space for casual discussions, personal sharing, and mutual support. The primary focus is on relatability and shared experiences among peers, rather than offering professional medical solutions.

Members are encouraged to connect, make friends, and share their personal stories. This is a supportive space for engaging in conversations about the daily challenges, coping strategies, and emotional aspects of living with VSS. We believe that offering and receiving support, encouragement, and understanding from others can be vital in coping with this condition. However, please note that these discussions are informal and should not replace individualized medical care.

If you have specific medical questions or need professional guidance, we recommend consulting with a licensed healthcare provider. For additional resources or information about VSS, you may also reach out directly to the Visual Snow Initiative via info@visualsnowinitiative.org.

 

 

Group Guidelines

 

We ask all group members to maintain a respectful and considerate environment. Personal feelings, experiences, and opinions may vary due to the diverse nature of VSS, and differences of opinion are welcome. However, these should always be expressed in a manner that is respectful and constructive, without disparaging or causing harm to others.

The following behaviors are strictly prohibited:

  • Bullying, harassment, suggestive, aggressive, or any other inappropriate behavior towards others
  • Use of disparaging, harmful, or threatening language of any kind
  • Any form of disrespect or intolerance towards another member’s personal experience

Note: If you call in without video, please display your first name in the room, so we know who is speaking and can address you properly.

Moderators reserve the right to remove anyone who violates these guidelines. Thank you for helping us maintain a supportive, respectful space for everyone.

HOW TO JOIN

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 (Click here to join)

You can also join by telephone at +1 646 749 3127 (US) Access # 656-182-845. Click here for more information on joining by telephone, including more information for international callers.

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.

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.

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.

Instructions for Joining a Group

 

Scroll Down to "HOW TO JOIN" on this page for link and other instructions.


Click HERE to sign up for email reminders for this, and other groups we offer.

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and you can drop in at any time!

Quick Links

 

 Click HERE for a complete list of resources

 

 

 

 

Upcoming Groups

 

Meet our moderators

Moderator
In 2022, Brianna was diagnosed with Visual Snow Syndrome, which inspired her to volunteer as a moderator for the Visual Snow Syndrome Support Group.
Moderator
Being the only person that she knew with VSS was isolating, so it was a relief to know that there was a community providing resources for those with VSS.
Moderator
As a passionate advocate for those experiencing Visual Snow, Leah brings a unique perspective to the realm of disability awareness and support.

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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.