For many people living with Visual Snow Syndrome (VSS), one of the greatest challenges is not only managing the condition, but also explaining it to others. Because VSS symptoms are invisible, many patients struggle to communicate what they are experiencing to family members, friends, and even health care providers. This can make the journey to diagnosis confusing and, at times, frustrating.
To help make Visual Snow Syndrome easier to explain and understand, software developer and Simple Questions Podcast host Dylan Carnahan created VSS Guide, a new mobile app designed to help people better understand, communicate, and navigate Visual Snow Syndrome.
Inspired by his own experience with VSS, Dylan developed the app to provide practical tools that may help patients explain their symptoms, learn more about the condition, and access neuro-optometric exercises in one place.
From Suspecting VSS to Receiving a Diagnosis
Dylan first suspected he had Visual Snow Syndrome after recognizing that many of his lifelong symptoms closely matched those experienced by others with the condition.
As host of the Simple Questions Podcast, he dedicated an episode to Visual Snow Syndrome in collaboration with the Visual Snow Initiative (VSI). Through the conversation, he gained a deeper understanding of the condition and felt encouraged to pursue a formal diagnosis. Like many people living with Visual Snow Syndrome, Dylan discovered that obtaining a diagnosis can take persistence. After advocating for himself and meeting with a neuro-optometrist for several hours of specialized testing, he was officially diagnosed with VSS.
Receiving a diagnosis answered many questions, but it also revealed a need for better tools to help patients understand and communicate the condition.
The Creation of the App
Although Dylan had spent considerable time researching VSS and speaking with experts through his podcast, he realized how difficult it could still be to communicate symptoms that are invisible to everyone else.Following his diagnosis, a clinician who knew Dylan was a software developer suggested he create an app for the Visual Snow Syndrome community.
The idea resonated immediately. He wanted to create a resource that could help people communicate what they experience in a clearer, more visual way.
The result was VSS Guide, an app designed to support people living with Visual Snow Syndrome through education, symptom visualization, and practical tools.
Features of the App
VSS Guide combines educational resources, symptom demonstrations, and neuro-optometric exercises into a single platform designed specifically for people living with VSS.
The features include:
- Symptom simulators that demonstrate visual snow static, eye floaters, and palinopsia, also known as “trailing afterimages,” helping patients show their most common visual symptoms.
- Neuro-optometric therapy exercises, including guided saccades, pursuit, and visual search activities that can be practiced between appointments.
- Educational content explaining the neurological basis of Visual Snow Syndrome in accessible language.
- A thoughtfully designed low-contrast “Visual Quiet” interface using oatmeal and charcoal tones to help reduce photophobia triggers and create a more comfortable viewing experience.
Looking Ahead
Dylan hopes the future of his new app will be shaped by the Visual Snow Syndrome community. His immediate goal is to gather feedback from users to better understand which features are most helpful and what additional resources patients would like to see.
Future updates may include symptom tracking tools that allow users to monitor changes over time, identify potential triggers, and record interventions that may be helpful. These insights could provide valuable information for both patients and their health care providers while supporting more personalized approaches to managing the condition.
Dylan is also interested in exploring opportunities to collaborate with organizations such as the Visual Snow Initiative to further support patient education, advocacy, and future research.
Recently, Dylan’s journey and the development of VSS Guide were also featured by Startland News, highlighting how his personal experience with Visual Snow Syndrome inspired him to create a resource that is helping others navigating the condition.
VSS Guide is now available on the Apple App Store.
Download the app:
https://apps.apple.com/us/app/vss-guide/id6768113458
Dylan also welcomes feedback from the Visual Snow Syndrome community to help guide future development of the app.
Share your feedback:
https://forms.gle/W1AM9BqSkSZoi3Zk7