Life with VSS
You may see the word “DeafBlind” on this page a lot. VSS doesn’t automatically make somebody DeafBlind, although it is now being recognised as a condition that affects both vision and hearing. My deafness is a separate issue until proven otherwise. You can find more information about DeafBlindness here. Dual sensory impairment (another term for DeafBlind) is something that some people living with VSS find that they experience, but that, so far, is a minority, and often explained by other things. My hearing loss, for example, is likely due to Ehlers-Danlos Syndrome, and a spending a lot of time around loud, fast cars.
Life with Visual Snow Syndrome (VSS) is different for everybody. It is as unique as a snowflake. For some, their VSS is mild enough that it is noticeable rather than impactful. For others, it is severe enough to get in the way of day to day living. I fit somewhere in the middle of that spectrum. Being visually impaired isn’t easy for any of us. This is a collection of videos, articles, studies, and web pages that talk about Visual Snow Syndrome in a helpful and supportive way. Nothing shared is meant to be used as a diagnostic tool, except for content that talks about the diagnostic criteria (because uh… yeah.). Living with a rare disease like Visual Snow Syndrome often means that what we know about the disease. I aim to keep on top of information shared as much as is reasonable.
My First DeafBlind Solo Travel
Visual Snow Syndrome shouldn’t get in the way of having a good time, so I took it with me on my first adventure out of the country. Here’s how it went, and some tips on how to manage VSS while travelling.
Why Are My Glasses Orange?
Do tinted lenses cure Visual Snow Syndrome? Spoiler alert, they don’t. BUT they are very helpful in managing it, and making like much easier to live. This video talks about the ins and outs of orange prescription lenses for VSS.
Useful Websites
The Visual Snow Initiative
The Visual Snow Initiative is the only known charity supporting people with Visual Snow Syndrome. They share study information, the diagnostic criteria, research, and information about Visual Snow Syndrome.
Visual Snow Simulator
A useful resource for describing your Visual Snow to people who may not understand right off the bat. You can show your visual snow simulation to peers and to medical personnel alike. Mine pretty much matches the default settings, for reference.
How Do I Recognise & Manage Visual Snow Syndrome?
A recent review article on the symptoms and current treatments of Visual Snow Syndrome. Published in 2024, it is a useful resource to show to medical professionals who have not heard of VSS before, or have never had a VSS patient before.
I’ve Never Seen A Plain White Piece Of Paper
Here’s my 101 on Visual Snow Syndrome. A very basic video on what Visual Snow Syndrome is, my own journey with figuring out that I have it, and how it affects my life.
Visual Snow vs Visual Snow Syndrome vs Snow Blindness
Not all that glitters is visual snow syndrome… What makes visual snow into visual snow syndrome? And why is snow blindness different?
Max Fisher RSci 