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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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Nirali Patel

Up until 2020, life had been proceeding without any significant hitches. Then, the world was thrust into the challenges brought about by the Covid-19 pandemic, and simultaneously, I found myself grappling with an array of perplexing symptoms. Given my high degree of myopia, I speculated whether this might have played a role in the matter. Among the symptoms were the persistent presence of excessive floaters, which I believed might be influenced by my myopia. Additionally, my vision exhibited a sort of static interference in low-light conditions, while bright light posed its own set of difficulties. I became all too familiar with intense entoptic phenomena, and to my astonishment, my visual field occasionally hosted peculiar, amoeba-like structures that were transparent yet black in appearance.

Driven by a need for answers, I embarked on a journey that led me to consult countless medical professionals, ranging from optometrists to seasoned ophthalmologists. My quest for clarity even led me to undergo an MRI scan, the results of which, to my frustration, yielded no discernible explanations. The uncertainty surrounding my condition cast a shadow of worry over me, particularly in relation to the prospect of potential vision loss.

Throughout this ordeal, the unwavering support of my family and friends was a source of comfort, even though none of their well-intentioned efforts managed to alleviate my distress. The frustration stemming from the absence of a definitive diagnosis was profound, leaving me feeling adrift in uncertainty. In my interactions with medical practitioners, I could detect a degree of doubt in their demeanor, as if they harbored skepticism about the validity of my concerns. Yet, my inner conviction remained steadfast—I knew that there was a deeper layer to my situation.

Just last week, a serendipitous discovery altered the course of my experience. Overwhelmed with emotion, I urgently shared the newfound website with my husband and family, tears of relief streaming down my cheeks as I implored them to explore its contents. It was a pivotal moment of validation; I realized I was not alone in this bewildering journey. The profound relief that flooded over me was unparalleled, knowing that there exists a community of individuals who share similar experiences, offering a much-needed support network.

Amid my efforts to cope, I’ve adopted a strategy of largely staying indoors, donning sunglasses when venturing outside, and seeking solace through the distraction of music. As I look forward, I remain open to the possibility of participating in clinical research, eager to contribute in any way that could shed light on my condition. In these moments, my heart swells with gratitude for the dedicated doctors and the visionary founders behind the website, tirelessly working to provide information and solace to individuals like myself.

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