Spotlight on: Valerie Yung ☮️ @val17y

“Whoever’s reading this, I hope you’re having a nice day. I used to be stuck in the mentality that I would never have a ‘perfect’ day because my clouded vision would never be cured; that I would never live to see anything crystal clear, or escape the constant fear of having another aura migraine. (I had one right before my maths exam–yes, great timing) I’m pretty much stuck with being the ‘family burden’ both financially, and emotionally, given my multiple emergency-room runs and MRI scans to no avail. Tinted lenses only improved my condition by at most 30%, and it was a little embarrassing to explain why I was always wearing blue glasses.

I’ve had VSS for as long as I can remember. Maybe I’m ‘better off’, since I was stuck with this neurological disorder and don’t ‘know better’ and have nothing to compare it to. Maybe it’s just a minor disorder and I should be grateful to even have coloured vision. Sometimes it’s comforting to compare yourself with ‘worser’ medical scenarios, but the debilitating feeling of self-pity and ‘why was I so unlucky to be born with this’ always trumps my outlook on VSS. Maybe that’s how you’re feeling now.

But hey–I’m not alone. You aren’t too. The fact that you are reading this right now, posted by the VSI, proves that you’re one step closer to embracing VSS as your identity, and not a burden. Feel free to join our VSS group chats, where we share coping advice and personal struggles–release that pent-up frustration from unwavering migraines or morning vertigo. Our group chats not only gave me a second-family, but also gave me study motivation to hopefully pursue some medical career in the future. If I’m successful, I hope to prove to you that VSS is not a burden, but something that can push you even further! Having VSS makes me feel like I’m ✨not like other girls✨and yes, it makes you extra unique as a fighter against this temporarily incurable disease :)”

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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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