To understand why this website exists and what it aims to achieve, I would like to tell you a little bit about myself. I developed Visual Snow Syndrome in December 2008, when I was 12 years old. It began with just a few symptoms – visual snow and excessive floaters and BFEP – but over time I developed a whole sea of symptoms. Throughout this time I had no idea what was happening to me. I was scared – I feared I was going blind. Other than mentioning it briefly to my parents, I never spoke to anyone about it. It also made me quite anxious, as I would constantly check if my symptoms were getting worse. Eventually, I decided to go to the doctors, but even after undertaking many different examinations over the years various specialists could not identify a problem. Consequently, many of the doctors did not believe me or thought I was crazy (though not all of them).
When I was 17 – 5 years after developing visual snow – I did some deeper research into my symptoms (I had done so earlier sporadically with no success). I found the name of the condition and the Facebook support group. This changed everything. I began to understand that my symptoms were all related, I was not going blind, it was not my fault (I believed spending excessive time on the computer had caused VS) and I was not alone. Following this, I quickly came to terms with my condition to point now where it hardly affects me, allowing me to lead a normal and happy life.
My story is fairly typical of most VS patients – living with fear, anxiety and a lack of understanding from doctors and others. Additionally, whilst I have managed to accept the condition, many continue to struggle with it as their symptoms are much worse than the mild severity I experienced. Therefore, www.visualsnowsyndrome.com was created with the primary aim of raising awareness of the condition; this should help patients understand their symptoms, instead of being in the dark for 5 years like I was. Similarly, increased awareness should help family, friends and doctors understand what a VS patient is going through. Furthermore, I hope that the increased awareness would translate directly to more donations to fund further research, which should lead to a treatment for VS and end the misery experienced by so many. Whilst information was already out there to help raise awareness and achieve these aims, the information was fragmented and often inaccurate. I strongly believe that www.visualsnowsyndrome.com is the most comprehensive website relating to VS.
The information on this site is partially based on my experience and discussions with other fellow sufferers, but it also heavily draws upon relevant academic literature. Admittedly I’m not an expert on the subject, but I feel that having had Visual Snow Syndrome since 2008 and researched the topic thoroughly gives the website’s content validity. I have tried to be as accurate as possible, but as the disclaimer at the bottom of every page states: this website is not intended to provide medical advice!
If you have any questions about Visual Snow Syndrome or would like to provide feedback on how this website can be improved, please contact me on email@example.com.