Because her condition remained such a mystery, she often seemed to be on the edge of disaster. In college, she was once suddenly paralyzed because of a blood clot that required 10 weeks of hospitalization. When a plastic surgeon tried liposuction to reduce the bulk in her legs, more tissue grew back than had been removed.
"In my mind, the condition has a mind of its own," Sellars said, "because whatever you take away grows back bigger and bigger."
It was through the Internet that she finally began to get a clue about what her condition might be. A friend of hers came across the site of an organization in Great Britain called the Proteus Syndrome Foundation U.K.. That finally led to a diagnosis, one that Sellars had been waiting years to receive. The unusual growth of her legs and knees was common to people with Proteus syndrome
"This is a very rare disorder. Certainly, less than one in a million," said Dr. John Graham, director of clinical genetics at Cedars-Sinai Medical Center in Los Angeles. "Proteus syndrome is named for the Greek God who could change his form. And because it was such an apt description of how these individuals rapidly change form from appearing relatively normal as young children to this startling overgrowth, the name has remained with the disorder ever since then."
The most famous case of Proteus syndrome in history was that of Joseph Merrick, also known as the Elephant Man, who died in 1890 and was the subject of a well-known movie about his life.
Merrick's condition affected his head and facial features as well as his arms and legs. Different patients may be affected in different areas. Doctors can't say what an average lifespan might be. The syndrome is poorly understood, but it is not believed to be hereditary.
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