Stacy Lipson writes: Todd Shaeffer of Philadelphia can bend his fingers completely backward, fold his ears forward so they stay that way and perform other cringe-worthy feats that would be impossible for most of us.
“I see it as a blessing,” says Shaeffer, 27. “I used to think I was a superhero.”
As a kid, Shaeffer impressed his friends with stunts like spinning his head around 180 degrees to look over his back and wrapping his arms around his entire waist and touching his fingers together.
While it sounds like something out of a circus show, Shaeffer suffers from Type 1 Ehlers-Danlos syndrome, a genetic disorder also called Rubber Man Syndrome that affects the connective tissue. According to the journal Manual & Manipulative Therapy, the first case of the disorder was recorded in 1657, but wasn’t diagnosed until the early 1900s.
There are six different types of Ehlers-Danlos syndrome, ranging from mild to life-threatening. In the most severe cases, patients can experience heart and kidney problems.
There’s no cure for Ehlers-Danlos syndrome, and diagnosing the disorder can be difficult for doctors and patients. Type 1 Ehlers-Danlos syndrome, one of the most common forms, occurs in fewer than 1 in 20,000 people and is characterized by traits such as joint hypermobility, soft skin and easy bruising.
Dr. Reed E. Pyeritz, chief of medical genetics at the University of Pennsylvania, said possible symptoms of Ehlers-Danlos syndrome include skin abnormalities or very stretchy skin.
“The range of joint mobility and patient discomfort can be an indicator," he said. Joint pain, without any redness or swelling, could be a sign of Ehlers-Danlos, Pyeritz said.
One of the biggest concerns for patients with Type 1 Ehlers-Danlos syndrome is degenerative arthritis, which can worsen as patients age. Shaeffer’s biggest worry about his diagnosis is how it will affect him in the future.
“I have to keep an eye on it,” says Shaeffer. “I try not to put too much stress on my joints.”
But that doesn’t stop him from performing for his friends and family. “It’s given me the ability to entertain,” he says.
Courtesy of Todd Schaeffer
Todd Schaeffer, 27, can bend his fingers completely backward and fold his ears forward due to Ehlers-Danlos syndrome, a genetic disorder that affects the connective tissue.
