Sean Stephenson

Using Osteogenesis Imperfecta to Motivate, Inspire

May 17, 2009 08:05 AM
by Sarah Amandolare
Sean Stephenson has not let OI stop him from succeeding and helping others do the same, calling attention to the rare genetic disorder and to overachieving underdogs.

Embracing Life

Stephenson was born with the disorder, also known as OI and brittle bone disease, which left him unable to walk and in constant pain as a child. At birth, doctors predicted he would live for just 24 hours but today at age 30, Stephenson has defied all odds. His story serves as motivation for those plagued with disabilities, as well as inspiration for anyone considered an underdog.

According to the Chicago Tribune, Stephenson works as a psychotherapist and gives inspirational speeches. His first book, a self-help manifesto titled “Get Off Your ‘But,’” was recently released, and he has filmed a television documentary for A&E. He’s also pondering a run for Congress after he opens orphanages for disabled kids and a summer camp to help children avoid self-sabotaging behavior. “I embrace my life,” he told the Chicago Tribune. “I’ve lived the life of a rock star.”
Osteogenesis imperfecta results from “a genetic defect that limits his body's production of collagen,” according to Cary Castagna of Sun Media. Stephenson gets around in a wheelchair most of the time, but at a young age decided to make the most of what he’d been dealt.

"I had to make that choice," Stephenson told Castagna. “If people are going to stare at me, I might as well have something good to say.”

He’s also made great strides by exercising. Since meeting prolific motivational speaker Tony Robbins in 1999, Stephenson has been doing weight training, cardiovascular work and stretching to relieve his back pain. He has not broken any bones since beginning the routine.

Opinion & Analysis: The underdog advantage

Stephenson’s ability to transcend such a severe disorder—one that has stunted his growth and left him with more than 200 bone fractures, according to Sun Media—illustrates the capability of the underdog, a subject of discussion in an article by Malcolm Gladwell in the May 11 edition of The New Yorker.

Gladwell indicates that underdogs have an advantage: “they will do what is ‘socially horrifying’—they will challenge the conventions about how battles are supposed to be fought.” Furthermore, underdogs like Stephenson are apt to change the proverbial game, making it based on “effort over ability.”

Related Topic: Overcoming polio

Martha Mason was confined to an iron lung after being paralyzed by polio at the age of 11. Mason spent 60 years of her life in an iron lung yet managed to achieve a great deal while confined to the machine.

Reference: Osteogenesis Imperfecta

The Osteogenesis Imperfecta Foundation has thorough information about the genetic disorder, which is “characterized by fragile bones that break easily” and lasts throughout a person’s lifetime. The disorder is caused by a genetic mutation affecting production of “collagen found in bones,” and is “not caused by too little calcium or poor nutrition.” The OI Foundation also reports that about 35 percent of OI sufferers do not have a family history of the disorder.

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