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Stories From Our Community



I read about the call-out to participate in the Beyond My Face awareness video through social media, and I jumped at the opportunity.

I wanted to take part in the video because having people see beyond my face is a challenge I live with every day.

I was born with Sturge-Weber Syndrome, which includes a large facial port wine stain as well as glaucoma. People often assume that because I look different, I am developmentally delayed. Growing up, I assumed their assumption was correct. It took me until college to realize that I was capable of completing rigorous academic work. I now have a Master's degree in nursing and work in the local hospital.

It’s impossible not to be aware of others’ potential reactions to my appearance. Going to the hairdresser, the supermarket, a restaurant – any new or public environment – can be emotionally draining due to the comments and stares I receive. My appearance has also made it challenging to reach my professional and educational aspirations as people have difficulty seeing beyond my face.

My facial difference has made me more private and more selective in whom I trust. But it hasn’t stopped me from enjoying a close circle of wonderful friends and family, or from exploring new adventures. Ultimately, I have had a fantastic life and am grateful for my experiences, as they have made me a strong person.

Continued public awareness campaigns like Beyond My Face are vital. People with a facial difference should be treated without automatic judgments and with respect, the way everyone deserves to be treated.

I am intelligent.

I am strong.

I am equal.

I am deserving of respect.

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