Spotlight on: Mike Ruggiero ⚡️@mrug003

“Hi everyone! I’m Mike, I’ve been living with VSS for almost exactly a year, while continuing work as a healthcare professional. At 6 months old I had craniosynostosis surgery in which my head had to be cut open. As a result, I was not allowed to play contact sports due to concussion risk. I had two concussions, one was terrible in 2013 and lasted 9 months. A year later I experienced “exertion migraines” which likely was a misdiagnosis. Fast forward to October 2020, I walked into Whole Foods and immediately felt overwhelmed. The room was spinning, lights were too bright, noise was disorienting, and I was in a complete state of disequilibrium. I tried not to vomit and power through, but ended up almost collapsing in the isles.

Luckily, my professional network connected me with an incredible vestibular physical therapist who helped me recover to the point where I could do daily functions. I saw retinology and neurophthalmology, but VSS was missed because the resident was not familiar with my presentation. An MRI found a lesion on my brain, unrelated to my syndrome, which neurosurgery monitors. Last month I was diagnosed with VSS by a headache specialist. Lamictal improved cognition, but I still see constant “tv static” with color, floaters, other visual disturbances, and saccadic intrusions,

In the last year, I spoke at multiple webinars, fundraised $2,785 for Cystic Fibrosis Foundation, and made so much progress in my career. I struggle daily, but work, exercise, and my incredible support system keep me level.”

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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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