Spotlight on: Mehran Akbari 〰 @mehraanakbarii

“Hi my name is Mehran Akbari I am 20 years old and here is my personal experience of VSS: I have had tinnitus since I was born, I always hearing ringing sounds in silence, and I thought that is normal and others were hearing the same sound, I do not remember whether I had VSS at that time or not because my VSS is very mild and I usually ignore them. When I was about 11, I paid attention to the dots like static in my night vision and I guessed something went wrong with my vision, but I did not know how to explain this to my family.
Since I was 13 I have been seeing floaters in my field of vision, since then, my attention to the phenomena that I see has increased. I went to an ophthalmologist who told me that I have BFEP. Early on, I suffered a lot from floaters and BFEP, but after a while I got used to them and ignored them.
Until a few days ago, I came once to research about dots I see in darkness or low light situations and after researching, I realized I have very mild VSS, and when I realized VSS and Tinnitus are related to each other, I was shocked. I did not think at all that the sound I hear in my head in silence is not normal.
Anyway, VSS and Tinnitus are normal for me because I was born with them and they are part of my vision and hearing. I realized that not everyone is the same as me and I have a rare syndrome called Visual Snow Syndrome.”

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“Ten years ago, in 2012, we presented work at a neurology meeting systematically describing why Visual Snow was not simply migraine aura and was a distinct disease entity. This was not received with universal acclaim, to say the least. In the intervening period, visual snow has come in from the medical ‘cold’ and is being studied actively by a number of groups on three continents. The recognition of the condition, broadening education, and funding research would not have happened were it not for the Visual Snow Initiative. I realize to the many with this often very disabling condition that it seems nothing has or is being done. Progress to treatment is never fast enough nor advances to recognition and understanding. With that said, visual snow research would be idling in a backwater where it not the Initiative. Going forward, we need to double, re-double, and re-double again our efforts for the search for effective treatments and, one day, a cure. Thank you for the Visual Snow Initiative for all you have done and continue to do.”

— Peter Goadsby, MD, PhD, DSc, Professor of Neurology, UCLA, Awarded 2021 Brain Prize

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