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Showing posts with label patient advocate hero. Show all posts
Showing posts with label patient advocate hero. Show all posts

Sunday, June 10, 2012

Recovering from facial disfigurement: We inspire them


Lesia Cartelli’s story:
     A girl from Colorado, I’ll call her Sarah, was in a car, hit by a drunk driver at age 13.  Her father and her twin sister, sitting next to her, were killed in the accident.  She had incredible facial trauma, with one side of her face paralyzed, so that only half her face could smile.  She spent a week with us at Angel Faces, and we helped her with a lot of role playing on staring and teasing, art therapy, and goal setting.  She went back and started speaking to all the drunk driving classes.  She was 15 at the time, and had aligned with really good, strong people, so she was able to take her trauma and make a real difference.  Now she has just graduated from high school.  For her, it wasn’t just about having her face disfigured by trauma, as she has lost her father and sister.  But she stopped being buried in grief.  

     Sarah told us all about this at Through Your Voice, which is one of the programs within Angel Faces.  Girls come back here and do a presentation about what they’ve done with their trauma to try to change their world.  The girls take their trauma and make something beautiful out of it.  So we can say to the others after a horrible accident, What are you going to do about it?  

     At Angel Faces, we’re in our tenth year.  I don’t have children of my own, but I have 200 teenage girls.  We create a community here, so the girls mentor younger girls.  They go through our program, then go out and live for a couple of years, go to college, get their feet into the real world, embrace their hard knocks, and then they can volunteer as a part of our team.

     I started Angel Faces after my accident.  I was burned as a child in a natural gas explosion.  After the hospital, where you’re in this loving womb of treatment, to go into the real world, with such grief, scarring, and trauma, and then, maybe you only get to see a therapist for 45 minutes a week, it’s really not enough!  I’d been at a camp for burn-injured children, which, I realized, was failing to address the true needs the children had, to get them through their injury with knowledge and grace, not just to entertain them with camp-like games.  

     I saw that if I got the girls in a healing setting, and gave them a path to express themselves and learn about their trauma, that was what was needed.  They start to put together their story to help people, and help girls just released from the hospital, who think “my life is over.”  We inspire them; they realize all is not lost; they can be a teacher to so many.

See the Angel Faces website.  Thanks to Lesia for the interview, and to Rick Stevens of Ascot Media Group for connecting us. 

Read Chapter 11, "Living for Others," for other patient advocate heroes in Ken Farbstein's book, Getting Your Best Health Care:  Real-World Stories for Patient Empowerment [e-book is available here].



Thursday, January 28, 2010

Through my dying day, and beyond: Gay Culverhouse Player Outreach Program

Her father was the founder of the Tampa Bay Buccaneers football team, and she herself later served as the company president. Somewhere along the line, Gay Culverhouse took note of the frequent long-term disabilities that NFL players suffer, and she took it to heart.

In October, she testified critically to Congress' Judiciary Committee of the House of Representatives about the NFL’s lax policy toward concussions and overall player safety. She vowed publicly to set up an organization to seek out former players in need, arrange their doctor visits, and help complete their paperwork.

She delivered. The fledgling Gay Culverhouse Player Outreach Program first sent an advocate to help Jerry Eckwood, a popular running back for the Buccaneers from 1979 to 1981. Jerry, now 55 years old, is unable to go grocery shopping, handle his checkbook, function on his own, or often even to speak coherently. His doctor strongly suspects he has dementia, after Jerry’s multiple concussions as a football player.

Gay has worked quickly to build the nonprofit program, which is based in Tampa, Florida. "I have to be made obsolete. The NFL is hoping that I made a one-shot deal in Congress and now I’ll go away. I’m going to fund this through my dying day and beyond. This thing can't die when I die."

Gay's selflessness and drive are particularly laudable because she herself is terminally ill with myelofibrosis, a disorder of the bone marrow that causes severe anemia and kidney failure. Former players admire her toughness and compassion. Former All-Pro tight end Jimmie Giles said, "I've never heard of anybody in football stepping up to the plate like this. This lady, she's like Gandhi to us."

Read another NFL concussion story. Thanks to Alan Schwarz for the source story in the Jan. 22 issue of the New York Times.

Advice to health advocates: Live like Gay Culverhouse.