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Stories From Our Community

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Ani

People have always called me an open book.

I am told that I am authentic, with no pretense or mask of perfection. And people seem to respond positively. I have made wonderful, genuine connections over the years.

So, why would I need to be “fixed?”

As someone with a facial difference, I have asked myself that question often.

I was born with Klippel-Trenaunay syndrome, with a large port-wine stain. At the age of three, I underwent tattooing at the Hospital for Sick Children. I vividly remember lying in that hospital bed and realizing for the first time that I was different…that I needed fixing.

Later came the rounds of painful laser treatments and the daily early-morning ritual of heavy makeup application.

Since early childhood, I had been a singer and performer. At the age of 24, I had had enough of hiding myself under layers of makeup.

The first time I walked onstage showing my true face, I felt incredibly empowered.

It was a risk to open myself up that way. I experienced online bullying that was painful and scary. And a later surgery meant I was no longer able to sing professionally.

But in the last few years, I have once again begun to use my voice. I use it now as an artist and as a motivational speaker.

I am proud to be part of AboutFace as a Board member, to do the critical work of building awareness, education and support of the facial difference community. It is time for our stories to be heard.

People with facial differences need representation in the media so that we are seen in roles other than the victim or the villain.

And the world needs to understand that it’s not up to us to change - it’s the attitudes of others.

It is time for us to be authentically ourselves. No fixing required.

I am a spouse and mother. I am a writer and speaker. I am an advocate.

 

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