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Mandy Sellars weighs 285 pounds, but the top half of her body only accounts for around 70 pounds of that. The rest is in her gigantic legs and feet. Sellars has Proteus syndrome, a rare condition in which parts of the body grow faster and larger than others. The most famous victim of Proteus syndrome was Joseph Merrick, also known as the Elephant Man.

“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.”

Sellars was born with a noticeable difference between her upper and lower body. As her body grew, her legs and feet grew twice as fast. No treatment could help.

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.

Proteus syndrome is a congenital disorder that causes skin overgrowth and
atypical bone development, often accompanied by tumors over half the body. Proteus syndrome is named after the Greek sea-god Proteus, who could change his shape. First identified in 1979 by Dr. Michael Cohen, only more than 200 cases have been confirmed worldwide.

Proteus syndrome causes an overgrowth of skin, bones, muscles, fatty tissues, and blood and lymphatic vessels.

Proteus syndrome is a progressive condition, wherein children are usually born without any obvious deformities. As they age, tumors as well as skin and bone growths appear. The severity and locations of these various asymmetrical growths vary greatly but typically the skull, one or more limbs and soles of the feet will be affected. There is a risk of premature death in affected individuals due to deep vein thrombosis and pulmonary embolism caused by the vessel malformations that are associated with this disorder. Further risks may occur due to the mass of extra tissue - Merrick himself died when the weight of his head dislocated his neck while asleep.

The disorder itself does not directly cause learning impairments: the distribution of intelligence among sufferers of Proteus syndrome mirrors that of the general population. However, the growths may cause secondary damage to the nervous system leading to cognitive disability. In addition, the presence of visible deformity may have a negative effect on the social experiences of the sufferer, causing cognitive and social deficits.

“In my mind, the condition has a mind of its own,” Sellars said, “because whatever you take away grows back bigger and bigger.”

The Woman With Giant Legs: TLC probes yet another medical mystery in this special (8 p.m. TLC).

Doctors can t tell Mandy Sellars why her legs keep growing – all that doctors say is that her only option is amputation. What’s more, her condition is getting worse and doctors say she needs an amputation so severe she won’t be able to sit up… Mandy doesn’t even know what’s caused it.

I try to lead a normal life but I do get frustrated,” she says. “The worst thing about my condition is that my mobility is getting worse and I have no control over it.

Researchers are still trying to determine the cause of Proteus Syndrome and a cure is yet to be discovered although a team of doctors in Australia have tested a drug called Rapamycin and have found it to be an effective remedy.

One case that captured the world’s interest in the Proteus Syndrome was the “Elephant Man”, a film that garnered several Oscar nominations in the 80s. It is the story of the life and struggles of Joseph Merrick as he tried to cope with his condition and the public ridicule it brought. Hopefully, researchers will soon find a cure for this condition.

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