Hello,
My name is Jérémie Greber, I am 36 years old and I come from Switzerland. I am affected by VSS since the end of last year (2025).
I feel an increasing need to share my story, as it is linked to the most difficult period of my life and the symptoms are weighing more and more heavily on my daily routine.
First of all, I would like to thank the Visual Snow Initiative for their research efforts, for bringing together people affected by the syndrome, for allowing us to share our stories, and for giving us hope for an eventual cure one day.
At the end of 2025, I gradually started noticing those famous tiny dots, the visual snow, as well as halos around streetlights when driving or walking home at night. I thought it was temporary, just due to tiredness. A few days later, I was at a restaurant with my wife and child. I mentioned to my wife that the lighting in the establishment felt strange, as I felt a sensation like a veil in front of my eyes. That is when my wife and I began to worry. Returning home that evening, I went out onto the terrace; the streetlights still had halos, I could barely make out the neighbors’ house, and it looked like an old CRT television screen that had lost its signal. At that point, the anxiety became serious. I did my first research and came across Visual Snow Syndrome, which I had never heard of before. In the following days, I noticed several more symptoms, such as flashes of light, vision distortions in broad daylight, light sensitivity, and others. It ended up leading to an emergency appointment with the doctor, who had no answers for me and sent me to the ophthalmologist. She reassured me that my eyes were fine, but made the diagnosis: VSS. She told me there is no cure, but had me undergo an MRI anyway, which came back normal.
Today, I try my best to live with it. There are days when it seems easy and I barely notice the symptoms, while other days are more filled with anxiety and depression. Knowing that this issue is likely to stay with me for the rest of my life makes it hard to stay positive at times. I find it difficult to talk about it with those around me, out of fear of not being taken seriously and due to a lack of understanding, as almost no one has heard of this syndrome.
My brother passed away at the end of 2023, which was the greatest hardship for my family and me. Since then, I have been going from one medical appointment to another. Our daily life is marked by this event and health issues. We find happiness through our moments and memories with family and friends. The unconditional support of my wife is what pushes me forward the most. Thank you so much, my love, I love you.
Sharing one’s story will surely not revolutionize research and results, but every small step counts. I encourage everyone affected by the syndrome to do the same; it can do a lot of good. Continuing life surrounded by friends and family is what helps me the most to forget about health worries. Love will always remain the best medicine.
All my sympathy to the people of the initiative, to the readers, and to everyone else affected by the syndrome.
