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”

Stay Informed!

Join our mailing list to receive the latest news and updates from the Visual Snow Initiative team! We'll include information about Visual Snow research, strategies to spread awareness, and upcoming events.

You have Successfully Subscribed!

Q&A Video Series with VSI Founder

New Videos Every Wednesday

Watch Now

You have Successfully Subscribed!