The story of Shana Talley
From the moment I wad born I was different grey hair and loss of pigment in my legs. Who knew that was the mildest of my symptoms. My parents had me seen by genetics and was diagnosed with waardenburg syndrome. Something no one in my family had ever heard of. Hereditary on my dads side of the family. Along with hearing loss and some stomach issues. That was the beginning of my rare disease journey. Luckily my brother and sister did not have any symptoms of the syndrome just me my dad and grandmother. Bullying for my wide spaced eyes, grey hair, and spots made school a challenge. Fortunately as I’ve gotten older I’ve learned to love myself as I am. My rare disease doesn’t define me.