West Penn burn support group to expand efforts

| Thursday, Jan. 9, 2014, 1:57 p.m.

Dennis Gillin flicked the match that sparked the fire.

Gillin, 45, of Beaver kept his role a secret for 30 years after third-degree burns scarred 15 percent of his friend, Kenny, and 35 percent of Gillin's own body.

They were just kids in Monaca — Gillin was 9 at the time — but the dishonesty afterward gnawed at him, he said. Now, he has recast his prolonged despair as inspiration, joining with other burn survivors to form an emerging support group hosted and sponsored by Western Pennsylvania Hospital in Bloomfield.

Survivor advocates say the group, Burn Concern, is among a growing number of support efforts nationwide that offer burn victims hope through living examples of recovery.

“You get courage from it,” said Ray Smith, 43, of Monroeville, a chemical-burn survivor who endured an induced coma for two weeks in 1996. “Life goes on. Everything gets better — we were just snowboarding the other day. If they (other burn survivors) see that and they know that, they know they won't be in that bed forever.”

One of at least six new coordinators at Burn Concern, Smith said the group wants to enlist 15 “peer supporters” for specialized training in February. The training, provided through the Michigan-based Phoenix Society for Burn Survivors, will equip local burn survivors and their families to talk and guide victims through the recovery process.

The effort should rank West Penn as the second hospital in Pennsylvania to be certified under Phoenix's Survivors Offering Assistance in Recovery program, known as SOAR, said Beth Ann Smith, 41, Ray Smith's spouse. The other, Lehigh Valley Hospital, is in Allentown.

“It's a family that gets burned. It's not just the patient,” said Beth Ann Smith, noting many family members can feel helpless at first. “It's a ripple effect.”

Formed in 2001, Phoenix puts a premium on preparing survivors' families to steer one another through yearslong recoveries, said Executive Director Amy Acton. She said burn support programs across the country have expanded over the past decade, encouraged in part by SOAR, word of mouth through the Internet and research affirming that such outreach might help social reintegration after bad accidents.

Medical care has advanced so much that people whose burns once might have been fatal are recovering instead, Acton said. She said about half of the roughly 120 burn centers across the country host SOAR programs.

“People with burns over 70, 80 or 90 percent of their bodies are surviving routinely. We're just now trying to catch up with the emotional healing,” Acton said. “Our message is that you don't have to go it alone.” SOAR focuses, in part, on dealing with a changed body image, including unwanted attention to scars, she said.

In Pittsburgh, Phoenix also is partnering with UPMC Mercy, Uptown. Mercy houses the first burn center in Pennsylvania and has hosted a variety of support groups, although those waned over the past year, said Michelle Fontana, manager of trauma and burn services at Mercy.

She said the hospital recently sent 1,000 letters asking former burn patients if they would consider joining the SOAR program, which will begin at Mercy in February. The first week of that month marks Burn Awareness Week, backed by the American Burn Association.

“Because it's a physical injury, it can have a very high psychological toll,” Fontana said.

Mercy admits more than 300 burn patients each year.

At West Penn Hospital, the figure is about 400 burn patients a year. Burn Concern there has plenty of room to grow, having drawn about a dozen people to a recent monthly meeting.

That's more than the handful who turned out for initial gatherings in late 2012, when a few survivor advocates independently asked the hospital about how they might give back or form a support group. Organizers leave literature with patients and hope to raise money to send local survivors to national events such as the World Burn Congress, an annual conference hosting hundreds of survivors.

Vanessa Rossi, 28, of Economy, a Burn Concern organizer who survived severe burns at age 7, said the bonds with other survivors can help victims foster a sense of belonging. Those enduring friendships can make it easier to talk about physical scars and to help keep survivors from slipping into depression, she said.

“You might need someone to be more comfortable in your skin,” Rossi said.

Adam Smeltz is a staff writer for Trib Total Media. He can be reached at 412-380-5676 or asmeltz@tribweb.com.

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