Patient Leader

When I was 11 years old, I was diagnosed with Crohn’s Disease and life went on. When you’re 11, you don’t understand the complexities of having an illness. You try to bounce back, not realizing you have new limits. I was taking pills, injections, and had surgery, all while living through the most complicated part of adolescence. When I was 16, I began to have horrible bouts of nausea and pain, I was diagnosed with Gastroparesis. I still tried to be normal, but my body was fighting hard. At 17, I was diagnosed with POTS after blacking out when I stood up. My determination was beginning to wear down. At 19 years old, I was taken to a geneticist to be diagnosed with Ehlers Danlos Syndrome. The list had become scarily long, I no longer felt like I belonged anywhere. Later that year, I was deemed as failure to thrive and was found to have horrible malabsorption. My Doctor made an emergency call for surgical intervention and I was given a feeding tube. My career as a model was crushed in that instant. Two days, after the surgery, I received an email that told me society would never see someone like me as beautiful and so, I was being fired. I was angry. I was hurt, I cried for three months because I felt ugly; unloved, as though I would never fit in. During that time, something clicked. Society had cast me away, so I would cast away society. I would create a place for those like me, ones who were deemed strange, different, for the ones who had nowhere else they felt they belonged. I created my Instagram page out of a place of anger, but it turned into a source of love. For every person that follows me, for every soul that shares their story with me; it continues to empower me in my ambition to change what the world thinks of the word “Beautiful.”


Boca Raton, FL


Advocating for Another Patient Leader Hero Best in Show: Instagram Best Kept Secret

So inspiring. Shows you that no matter what your dealing with that you can still have a passion and is very talented and that having bad days and taking time for yourself is good too.  — Shannon

An encouraging and beautiful soul who never fails to make others smile even if she isn’t feeling the best.  — Starla

Such a sweet person and is always making sure everyone is doing alright, and I love seeing her make up posts and how honest she is in her comments.  — Elizabeth


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