It is important to get to know the people and faces behind a disease. No two experiences are alike. Visual Snow Syndrome is on a spectrum from mild to severe cases. From people born with the condition to people who have a sudden onset. Here Liz Brent-Maldonado will tell you her story and journey with Visual Snow Syndrome.
I've had Visual Snow Syndrome my whole life. I remember talking to my mom about it when I was 8 or 9 and realizing that I was seeing things that no one else was seeing (constant sparkle static, extra glow and colors around everything, after images, trailing images, and stars-times-a-billion between the real stars in the night sky). She encouraged me to talk to our eye doctor about it, but he thought I was talking about floaters and dismissed it.
I always hoped it was a superpower I could harness, but instead spent a lot of my life ignoring it in order to just live normally. I never told anyone about it except the occasional significant other. I was always afraid that if I talked about it with doctors or scientists, I would be told I was losing my mind or I would end up locked up in a hospital or lab (I realize this is extreme, but I watched a lot of science fiction movies and tv shows!).
In 2015 I started writing a series of autobiographical essays and realized what a mystery my unique visual experience is and that I wanted to write more about that!
In 2016, I ran across the term "Tetrachromatic Vision" and thought that maybe that was what I had. That discovery inspired a long process of facing my fears, contacting scientists, and getting a new series of ophthalmology tests (which came back normal).
In 2018, I ran across the term Visual Snow Syndrome and realized that this was a better match for my experience. I'm currently writing a book about my investigative journey and living with what I still call my "sparkle vision."
But this year, I was able to share the Visual Snow diagnostic criteria with my primary care provider, which led to confirmation of my self-diagnosis by two neurologists!
I've overcome a lot of fear and doubt to be able to talk more openly to everyone from medical professionals to friends and family about my experience. My dream is to publish my book, help others who experience VSS, and bring awareness to neurodiversity.