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By Alexandra Vitale, as told to Jo Cavallo  / March 25, 2023

I Haven’t Known a Life Without von Hippel-Lindau Disease

Von Hippel-Lindau (VHL) disease has been with me since I was 5 years old, when a benign tumor was found on the optic nerve of my left eye, leaving me blind in that eye. But I didn’t get an official diagnosis of the disease until 2011, when I was 20. By then, it was like a light switch had turned...