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Karen

As an educator who helps to deliver mental health services to children and families, sharing information and support comes naturally to me. It has definitely been invaluable through the journey my daughter and I have had with alopecia.

My parents first noticed circular bald spots on my head when I was 18 months old. After exploring other potential causes, I was finally diagnosed with alopecia areata, beginning a cycle of creams and cortisone injections. My alopecia was inactive during the summer and in an effort to simulate my days spent swimming at the lake, I remember a nightly ritual over the winter months of sitting in front of a sun lamp followed by a bath and cold water on my head.

My alopecia continued to wax and wane until my adulthood. While dormant throughout my 20’s, it then suddenly reappeared with a vengeance at age 34. The usual treatments had little to no effect, so I tried a couple of experimental treatments, but four years later, my hair loss was complete and has remained permanent.

My mother had long been connected to the National Alopecia Areata Foundation in the US and had encouraged me many times to become involved. That support became a lifeline when our daughter Ashlyn was diagnosed with alopecia universalis. Ashlyn was in kindergarten when we first discovered a bald spot on her head and by the end of grade one, her hair had completely fallen out.

It became a family tradition to attend the NAAF conferences every summer and I eventually helped to start the Canadian chapter. AboutFace has been another wonderful resource for us to learn, connect and give back. Through experiences like Camp Trailblazers, where Ashlyn was a long-time camper and last year a camp counsellor, she has developed the tools, language and confidence to educate others on her condition.

I believe that face equality can only be achieved through education – breaking down the stereotypes and misconceptions related to facial differences. It is my hope for all living with a facial difference that we can live within our communities and countries free to be ourselves, treated with respect and the understanding that we are so much more than our difference.

I am who I am.

I am free to be me.

I am lovable and capable.

I am interested in sharing my story. Are you ready to listen and see beyond my face?