Spotlight on: Mandana đź’™
Hello! My name is Mandana Omidbakhtiyari, I’m 36 years old and I live in Glasgow, Scotland. I was born in Iran and moved to the UK a few years ago. Living in Glasgow made a huge difference in helping me understand Visual Snow Syndrome, because in Iran, there are very limited resources and almost no awareness about this condition — most people, including doctors, have never even heard of it.
I’ve had Visual Snow Syndrome (VSS) since early childhood, but I didn’t know it had a name or that it was a recognized condition until recently.
For over 35 years, I simply assumed that the way I saw the world — with constant static, flashing lights, afterimages, and more — was somehow “normal” or just part of how my eyes worked. It wasn’t until very recently that I asked myself, “Why do I see like this?” and started searching for answers. That’s how I discovered VSS.
I experience classic symptoms of Visual Snow Syndrome 24/7 — including visual snow, palinopsia, photophobia, tinnitus, and more — even with my eyes closed. It has been incredibly difficult to explain to others, and most people assumed it was just anxiety or stress. But now I know it’s neurological, not psychological — and that validation has meant the world to me.
The symptom I struggle with the most is the constant pixelation — the “grain” or static that covers everything I see. It’s always there, and it makes me long to one day experience what true darkness looks like with my eyes. That’s something I’ve never seen in my life. I deeply wish to feel real darkness with my eyes and know what it truly looks like.
Discovering the Visual Snow Initiative gave me hope and direction — not just for medical recognition, but for personal strength. I’m currently working with doctors and using VSI’s tools to advocate for my health.
My message to others living with VSS:
You are not imagining it. You’re not alone. And it’s never too late to seek answers. Keep pushing forward — with knowledge, support, and self-compassion, life with VSS can be lived fully.
