Proteus Syndrome

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.

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

Link -Thanks, Cesar Partida!

(image credit: Caroline Borge/ABC News)

Mandy Sellars was documented some time ago in a TLC special I consulted on. At that time her condition was undiagnosed and I must say that I am surprised by the Proteus positive result. Her deformity is not really typical of the condition and I was quite confident she suffered from Milroy’s Disease as Fanny Mills before her.

Now I wonder if Fanny's diagnosis should be reconsidered.
http://thehumanmarvels.com/blog/?p=42
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Proteus Disease also causes the distinctive walnut shell look to the areas affected, the souls of the feet if affected are particularly effected. But Miss Sellars feet were smooth.

I don't think there has been a definitive diagnosis yet that everyone could get behind.

I saw her on TV a couple of weeks back and she came across as a splendid sort of person, very kindly.

She was debating whether to have her legs amputated as they are demanding so very much from her body, as the article says she is very slightly built, or as they say round her neck of the woods "more meat on a butchers pencil".

I do hope she doesw get an an absolute diagnosis, and some relief, be it amputation or stem cell miracle.
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Ive seen her on television recently as well. I found it interesting that she was anticipating the day that she would need to amputate her legs so that she could enter a wheelchair marathon.
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