Spotlight on: Sara Parrilla 🌱

“My name is Sara and I come from Spain. I am 33 years old and I’ve been experiencing VS ever since I was 14. For me, depersonalization and visual snow made their appearance together. I remember I was just sitting on the couch watching TV and something clicked in my brain. The next second I just couldn’t perceive visual inputs “normally”. I suddenly felt I was seeing the world from a different angle, and there was a kind of transparent filter separating my brain and the outside world.

That same day, I realised something else had changed. When it got dark, I started seeing these moving bright dots all over the place like in a static TV. White walls and the blue sky also seemed to have dots & floaters, and some colours really bothered my eyes. Perception of space was weird as well and I started suffering from mild vertigo episodes. As I wasn’t a regular smoker, I put it down to marijuana I had smoked just a couple of weeks before (which had triggered a panic attack). However, weeks went on and these symptoms seemed to persist. They never left. No doctor explained or diagnosed that I was suffering from VS and depersonalization. It was extremely scary as I thought everything was in my mind. I prayed so hard to feel “normal” again.

Eventually, I accepted these conditions were going to be a part of me moving forward. Even though I didn’t understand them, I stopped fighting them; and that’s the moment when things started getting better. VS and DP haven’t stopped me from studying, living abroad and enjoying life, like everyone else.

It wasn’t until quite recently, where I started researching these symptoms and found out about both conditions. I realised I suffered from a mild form of visual snow, and I read that VS and depersonalization can be a consequence of each other, so that made sense at last! And I was not alone at all!

To this day, no doctor (neurologist, neuro-ophthalmologists etc) have diagnosed me. I have mentioned VS to some but they don’t seem to have a clue about what I’m talking about! Thank you for raising awareness and reaching people like me, who were looking for an answer.”

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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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