Hi! My name is Ava. I’m 16 years old, and I’ve had quite the health journey! When I was 11, I experienced my first migraine. I started noticing that parts of my vision would disappear, followed by a severe headache that left me nauseous and confused. A few months later, in February 2021, I woke up to what felt like a snowstorm—not outside, but in my head. The static covered everything, and new symptoms began to appear as the condition evolved. After months of uncertainty, I was finally diagnosed with Visual Snow Syndrome.

The diagnostic journey was absolutely worth it. So many people benefit simply from having an answer instead of being called a “mystery.” As I learned to live with the condition, 2025 brought a whole new set of challenges. I was diagnosed with POTS, and now I often struggle with tachycardia, shortness of breath, and circulation issues. “POTS Plus” best describes what’s happening, as it includes Postural Orthostatic Tachycardia Syndrome and other related conditions that come along with it.

To manage my VSS, I always keep sunglasses on hand, use eye strain filters on my devices, and have special lighting setups in my room to make things easier on my eyes. I’m incredibly lucky to have a strong support network of friends and family—especially my mom, who has helped me through so much. I couldn’t have done it without her. I also play piano and clarinet, which truly helps take my mind off everything, even if just for a little while.

Music is my favorite thing in the world, and so many wonderful opportunities have come my way simply because I’m here and keep going. My advice to anyone who is trying to get diagnosed, has been diagnosed, or is supporting someone with VSS is to be brave. It can be terrifying when your world feels like it’s been turned upside down, but there’s so much that will keep you going—from the love and support of family and friends to small acts of kindness and the comfort of finding a community that truly listens.

You are not a mystery. You are important, special, and so much more than you may ever realize. Stay strong!