Meet Our

Warrior of the Week

These inspiring individuals with Visual Snow Syndrome are sharing their experiences living with this condition and how they try their best to overcome its symptoms everyday.

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Meet our #CreativeMind of the week, Alex

Spotlight on: Alex

Hello, my name is Alex. I’m a full-time parent and artist. About 7 years ago, I started experiencing Visual Snow symptoms. It began randomly with headaches, dissociation, and fatigue, which weren’t entirely abnormal for me. I’ve always had chronic pain, worn glasses, and had floaters in my vision. However, this time, something felt different. My entire visual field was noticeably filled with static, like an old TV set.

Over time, my eyes became extremely hypersensitive to light, and I started experiencing palinopsia (afterimages of lights/objects), auras, flashing dots, and night blindness.

Naturally, it became concerning and frightening. I visited multiple optometrists to have my eyes examined. While they found slight blurriness and astigmatism in both eyes, they couldn’t explain my symptoms. One kind doctor suggested I see a neurologist to address my growing concerns and offered blue-tinted lenses, which provided some relief.

As months passed, my anxiety grew, making daily tasks more stressful and exacerbating my visual snow symptoms. Eventually, I saw a neurologist and underwent an MRI and other tests, which all came back normal. However, the doctor noticed a small fracture in the back of my skull, assuming it could be the cause. When I tried to explain my Visual Snow experiences, the doctor seemed indifferent, confused, and dismissive, suggesting I may need a psychiatric exam. While the normal test results were relieving, it was not reassuring to be met with such a response.

Today, I still unfortunately deal with these symptoms, varying from better to worse on different days. I don’t have all the answers yet, but the Visual Snow Initiative (VSI) has brought me comfort and clarity during moments of isolation, depression, and hopelessness. It’s reassuring to know that I’m not alone and to connect with others who share a similar experience. I sincerely hope that one day we find a cure or treatment to alleviate the symptoms of Visual Snow. It’s challenging to navigate this journey alone. Some days, I still question if I’m making it up (even though I know I’m not), but it’s easy to fall into that doubt.

Thank you for reading, and thank you to VSI for continuously sharing new information. I hold onto hope that we can eventually alleviate or cure the symptoms of Visual Snow.

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