From his voice, you wouldn’t know Shannon Rose has a life-threatening disorder called Ehlers-Danlos Syndrome. And after speaking with him, you’d know that he doesn’t let this diagnosis get in his way.
Rose says, “Since the age of birth, I’ve always had an interesting life.” Rose was diagnosed at age 2 with Ehlers-Danlos Syndrome, or EDS, an incurable disorder that affects the body’s connective tissue. EDS is characterized by fragile skin and unstable joints as a result of faulty collagen; it is collagen’s duty to act as a “glue” in the body.
EDS is a rare disorder, and the general public (and even healthcare professionals) is uneducated about it — which is why Rose has set out to “talk about what’s not known.”
Rose recalls trips to the emergency room: “I tell them I’m a national spokesperson, and they tell me I’m crazy.” Then he tells them to look him up on Wikipedia, and they know he’s not insane.
Rose goes to schools and talks on the radio and television to spread a “message of hope,” he says. “No matter your disability, don’t let doctors tell you that you can’t do something.”
Rose has a history of fighting what doctors say about him. At age 10, he lost his voice for a year, but that didn’t stop him from participating in his school choir. “I was lip-synching before it was cool,” he says. At age 13, both of his arms were paralyzed, and doctors told him he probably wouldn’t be able to use them again.
But the determination of Rose would not be restrained. As an avid fan of professional wrestling since age 12 — “They were larger than life. I wanted to be these people who had the audience in their hands,” he recalls — Rose was offered the chance to meet Hulk Hogan through the Make a Wish Foundation. At age 14, Rose attended a match, and the ring announcer didn’t show, “and they put a microphone in my hand,” he says, “and the rest is history.”
Rose has made a career as a professional wrestling announcer. Known as Mr. Hollywood, Rose also works as an actor and Hollywood reporter, and he started his own PR company. He even fulfilled a life-long dream in video games, and he stars as one of the ring announcers for the EA Sports MMA game.
Through this story, Rose hopes “kids can look up to someone who conquered their fears and doctors saying we wouldn’t be anything at all.” Rose wants to educate the mass about EDS, and he is working with studios and producers regarding a book and movie about his life.
Rose says, “Others might not be aware that when I walk or I drive, I’m in pain. It’s something I’m used to it and deal with everyday.” Rose makes it easy to not see the pain, and he’s accomplished incredible goals that he has set for himself.
Rose gives advice to those with disabilities and the public in general: “Never say ‘I can’t’ because you can.”
Visit Shannon Rose online at www.imshannonrose.com.