Sept. 9, 2008— -- One of the few things Mandy Sellars wanted out of life was something many people tried to avoid.
"In life, a lot of people don't like to be labeled as this or that or the other," Sellars said. "But all my life, I've been kind of searching for a label for myself."
The label, she thought, would be the answer to a mystery that her doctors had not been able to solve.
"There's been hardly any contact with doctors," she said. "I've been kind of, in my own words, put on the shelf and kind of forgotten about."
Sellars is 33 years old and weighs 285 pounds. Her upper torso is a petite size 8 and accounts for only about 70 or 80 pounds of her weight. The rest is in her legs and feet.
"When I was born, there was a noticeable difference between my upper body and my lower body," Sellars said. "They didn't actually expect me to live further than about a few, a few days or so."
Throughout her childhood, the growth of her legs continued to outpace the rest of her body until she could no longer move on her own. She walks now with the aid of crutches and drives a specially equipped automobile.
Near her home in northwestern England, Sellars goes to a private shoemaker. Her right foot is 16 inches long and 7 inches wide, and her legs are of differing lengths because the left foot -- a club foot, 11 inches long -- faces backward.
So the fittings are delicate. It takes weeks of trial and error to produce the final molds for a pair of boots, and they will cost around $4,000 -- money she has to raise because she is unemployed.
The public's reaction to her has sometimes been brutal. She recalled being heckled once by a gang of youths.
"Just walking through the park with a friend, that's all. And, there must've been three, four, five, teenagers on bikes, or something," she said. "And they just started making the usual kind of comments, you know, 'Oh, my God, look at that.' You know, 'Isn't that disgusting?' And just kind of circling myself and my friend on their bikes. Something like that is very intimidating."
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.
Sellars lives independently in a home that has been only slightly modified for her, but even common household tasks -- fixing a cup of tea -- can be exhausting. She visits a nutritionist, hoping she can lessen the effects of Proteus syndrome through diet, but so far, it hasn't helped.
She has been told that eventually she may need to amputate her legs. She's already considering how she will live her life then and has even thought about entering the London Marathon as a wheelchair racer.
"I'd love to do that," Sellars said, "and hopefully then be able to wheel myself and train hard enough to be able to do that, and raise money for charity that's helped me."
For more information on Proteus syndrome, click here.