Sam’s Story: How AboutFace is Helping People with Facial Differences

August 6, 2013


Sam, February 2013

Dentists know that a great smile has the power to connect. But for people living with facial differences, connecting with others isn’t always easy. Everyday interactions can come with emotional hardships of feeling anxious, alone or depressed. A young woman has shared her story on Facebook to raise awareness about her struggles living with a facial difference and describe how connecting with AboutFace—a charitable organization that provides support, resources and educational programs to individuals with facial differences and their families—helped her feel truly connected for the first time.

Sam’s Facebook  posts provide a personal account of what it’s like to live with an obvious facial difference. Visible skin abnormalities first started to appear when Sam was 10 years old. By the time she was 13, the degenerative autoimmune conditions she was eventually diagnosed with had deteriorated half of her face, leaving only skin and bone.

There were the physical challenges of undergoing 13 reconstructive surgeries, over $40,000 in dental work and countless hospital visits, but the emotional costs were perhaps even more difficult for Sam. In one post, she says, “I struggled a great deal with depression, anxiety and incredibly low self-esteem from the time of my diagnosis until the age of 21, when I sought out professional help. Although I am much happier and confident than I ever thought possible in my teenage years, having a visible difference is still a struggle. People can be cruel and judgmental, and not being able to walk out my front door without being stared at everywhere I go is sometimes quite a challenge.”

Discovering AboutFace was a turning point in Sam’s life. “It was the first time in my life that I met people who had facial differences, as I did,” she recalls. “It was also one of the few times in which I walked into a room full of strangers and did not feel even the tiniest air of judgment.” Through AboutFace, Sam found a community where she felt understood and accepted.

“Many of our members say that connecting with others who share a similar experience is one of the most powerful and empowering moments of their lives,” says Anna Pileggi, executive director of AboutFace. “Suddenly their feelings of isolation and loneliness are diminished.”

Sam also found opportunities with AboutFace to spread awareness about her condition and help others with facial differences. This year, Sam will be participating in the AboutFace skydiving fundraiser, Leap of Faith, for the second time. The money raised will help send children with facial differences between ages 10–18 to Camp Trailblazers, a weekend camping retreat that happens every year in various locations across Canada. The camp provides kids with the connections and support they need during a critical point in their lives. “For the majority of my teenage years, my diagnosis affected me greatly,” Sam explains. “Puberty is such an awkward time as it is, but to have a visible facial difference on top of that was very difficult.”


Sam skydiving in her first Leap of Faith fundraiser for AboutFace, June 2012

Ms. Pileggi describes a transformation she has seen in the children attending camp: “In the eyes and faces of these children we see a beautiful spirit that transcends their facial differences. Camp Trailblazers is about teaching kids to keep that spirit alive their whole lives.”

One of the important lessons Sam has learned is simple: “Laugh. Laugh as much as possible. It can be so healing.” She says, “When you stop focusing on your own differences, others will focus less on them and then we can start to understand each other.”

CDA has partnered with AboutFace to make a difference in the lives of people like Sam. CDA’s advocacy initiatives include working towards achieving a national standard of care for cleft lip and palate and craniofacial dental programs, to ensure that Canadians with facial differences across the country have access to quality care.

For more information on AboutFace, visit aboutface.ca.

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