Spotlight on: Ania Jankowski 💙 @sunflower202223

“Hi friends, my name is Ania. My VS occurred early spring of 2019. I went for a walk on an overcast day & noted it appeared to be drizzling, except it wasn’t. It’s been constant ever since. I experienced severe dehydration & a concussion a few months prior & have pre-existing, established diagnoses of dysautonomia, autoimmune mediated small fiber neuropathy, POTS, neuromuscular disease, suspected connective tissue disorder, & a host of other autoimmune markers, including a few anti-retinal antibodies. Given my own medical training in the health field, I can’t help but often ponder if my VS is connected to any of the above, or would have manifested on it’s own regardless.

I feel blessed to have the medical knowledge I do as it allowed me to be an advocate for myself & am extremely grateful to have an open-minded neuro-ophthalmologist on board. However, over the past few years since my diagnosis, it’s been discouraging to realize how little VS awareness I’ve encountered in the medical community regarding diagnosis, addressing common coexisting symptoms, & possible treatments/therapies. My hope is that my case & self-advocacy may serve as a catalyst among my providers within different specialties.

Meanwhile, what has helped me cope? Spending as much time in nature as possible. Engaging with those who make you feel good, who uplift & strengthen you, who demonstrate genuine compassion, who you have fun with – because you are so much more than your VS! Not everyone will even make an effort to understand your journey, which can initially be hurtful, especially if they are close relationships. I’ve found it’s healthier to release this discouragement & be grateful for those that acknowledge your grit & grace managing this condition while being the amazing person you are. Above all, faith. Faith has been my anchor. I trust God that he will continue to give me the strength & endurance I need each day. Faith recharges me, it gives me hope & hope is everything. Faith over fear. Trust in the Lord with all your heart & lean not on your own understanding – Proverbs 3:5”

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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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