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More than a face

4 min read
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If you cross paths with Karen Scuilli, don’t look away.

“When you see someone with a disfigurement, you don’t see them, you see their disfigurement. What I want people to know is to acknowledge it. We’re still a person,” Karen said. “Engage us. Don’t exclude us because we look different.”

Karen, 52, of South Strabane, was diagnosed in 2012 with parotid cancer that spread to her facial nerves. A tumor in her cheek was removed through an incision that spans from the top of her head to her neck. The surgery and other procedures, including jaw realignment, caused a facial disfigurement that took Karen a while to accept.

“It’s almost like a grieving process – grieving for the life or face you had before,” she said. “When you release that – when you embrace the change and know that you’re more than your face, more than your scars – there’s a true beauty that comes from that.”

As co-founder of Face2Face Healing, Karen sees beauty on a regular basis. Her nonprofit connects people with disfigurements and provides services and support to those who have face or body differences from causes including cancer, burns, birth defects, neurological issues and injuries. Face2Face provides funding for services like massage therapy, yoga and acupuncture.

“These things help in the healing process to complement Western medicine,” Karen said. “For people who have cancer or burns, treatment can be very expensive and financially constraining. We want to make sure we help individuals in the healing process.”

Through video conferencing, Karen is able to connect with people from all over the world.

“There are a good variety of individuals from different backgrounds. Each of us have a different story, but something resonates with each of us,” Karen said. “It’s almost like words don’t need to be spoken. We know the journey that each of us face isn’t easy. It’s like an automatic friend.”

Observer-Reporter

Observer-Reporter

In this 2014 photo, Karen Scuilli, shown with her son, Seth, was just gaining national and international attention for Face2Face.

Karen, a former nurse and case manager, said in the aftermath of her diagnosis and surgeries, she withdrew from loved ones. She felt alone. But with the help of her son, Seth, now 14, Karen realized she could use her experience to help others.

“It’s really about being empowering and accepting who you have become,” she said. “My son said, ‘I hate that you went through what you went through, but look at how many people you are helping.’ So, it’s a curse and also a blessing.”

For her work, Karen won the Jefferson Awards “Most Outstanding Volunteer” May 9 during a ceremony at the Heinz History Center in Pittsburgh. The Jefferson Awards Foundation, founded in 1972 by Jacqueline Kennedy Onassis, Senator Robert Taft Jr. and Sam Beard, recognizes community and public volunteerism through its national award.

Karen will travel to Washington, D.C., next week for the national ceremony, where she will have the opportunity to speak with elected officials about Face2Face.

“I’m in awe. Now we have national and international reach,” said Karen, who plans to include more outreach with veterans and to create anti-bullying initiatives in schools.

Celeste Van Kirk/Observer-Reporter

Celeste Van Kirk/Observer-Reporter

Karen Scuilli, at her South Strabane Township home, said she is fulfilling her mission by creating a community of support.

Karen encourages people who have a disfigurement to make connections.

“If an individual is reluctant to come forward and seek help, I beg them to reach out to me. Being able to connect with individuals like us has been huge. … It’s about moving forward,” Karen said. “We’re all people. What we find is that people who went through adversity, they’re amazing, strong people. They have such great stories. Take the time to listen to their story. You could learn so much. The compassion we have is amazing.”

“I’m honored to meet the people I have. I’ve been blessed beyond measure, truly blessed, and I thank God every day. Even though it was a difficult journey, I know this was my mission – to create a community of support.”

Face2Face will assist Mission of Mercy Pittsburgh with a free dental clinic June 29 and 30 at PPG Paints Arena, Pittsburgh. Volunteer dentists and assistants will be providing services for children and adults, including cleanings, fillings, extractions and oral cancer screenings, starting at 6 a.m. on both days. No appointment is necessary and there is no income requirement. For more information or to volunteer, visit www.mompgh.org. For more information on Face2Face Healing, visit www.face2facehealing.org.

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