Skye Miu Steppe

Patient Leader

At 12 years old I was diagnosed with Fibrous Dysplasia in the entire right side of my face and skull, I spent years embarrassed of myself because of my chronic illness. I was bullied for my facial deformity, scars, surgeries and was told I was faking and lying about my illness and the pain that my FD causes me. To date, I have had three facial reconstructive surgeries, two bone grafts, and one cadaver bone. I spend my time creating awareness videos, writing articles and running my own nonprofit, FD Warriors Inc. I encourage others to speak out about their daily struggles through my own website and social media pages. I have Fibrous Dysplasia, but it no longer defines . who I am.


Sweetwater, TN


Patient Leader Hero

Always there with a smile no matter what she is going through Skye leads by example. Showing others that it is possible to have a wonderful life while struggling with difficult medical challenges. Represented FD Warriors during Rare Disease Week on Capitol Hill 2017.  — Rebecca

Skye Miu Steppe

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