Mandy Sellars is a 36-year-old British woman who has been diagnosed with a very rare condition called Proteus syndrome (also known as Wiedemann syndrome). There are 120 people in the world who suffer from this syndrome, but Mandy’s case is unique in the world.
Mende was born with unusually large legs and feet, the disproportion of which only increased as the girl grew. In 2009, at the age of 34, the woman weighed 133 kg, of which 38 kg was her body above the waist, and 95 kg was her legs and feet.
For many years, doctors were unable to make a diagnosis. In 2006, several doctors decided that it could be Proteus syndrome, a congenital, incurable disease that causes excessive and uncontrolled growth of skin, bones, and other organs. However, the case of Ms. Sellars, who lives in Accrington (Lancashire, United Kingdom), is unique – no other case of this type has been recorded in the world. The most famous case of Proteus syndrome in the world is that of Londoner Joseph Merrick, known as the “Elephant Man.”
When Mandy was born, doctors couldn’t guarantee that the girl would live long. A week or two at most. Her left leg was 7 cm longer than her right and turned backwards. Her legs were disproportionately large. No one could say why.
However, the doctors’ predictions did not come true – at the age of 18 months, Mandy began to walk. When the girl turned 7, doctors recommended that her mother June have both legs amputated. However, the mother, wanting her daughter to have a normal life, did not agree.
“I could never run as fast as my friends, but I could play in the yard,” Mandy recalls with a smile. “I learned to ride a bike, but it took me 16 years to learn how to balance on training wheels. It makes me angry now, but I didn’t care at the time. My legs started growing when I was very little. I went to a lot of doctors.”
At the age of 19, Ms. Sellars began to live independently. She graduated from the University of Central Lancashire with a Bachelor of Science in Psychology. She was able to live completely independently, without any helpers. The young woman walked with crutches or rolled in a wheelchair, and drove a specially adapted car with a manual control system.
“I lived a normal young girl’s life,” says Sellars. “I went to dances, I had all sorts of night outs at all-night bars.”
At the age of 28, Mandy suffered a serious health problem. A venous thrombosis paralyzed the woman below the waist for about 6-8 weeks. After that, the British woman had to learn to walk again. It took several months.
Three years later, an injury to one of her legs led to a blood infection, which caused kidney failure. Ultimately, in 2010, the woman had to have her left leg amputated below the knee.
However, 22 months after the amputation, the limb began to grow rapidly again and inflate like a balloon.
However, 22 months after the amputation, the limb began to grow rapidly again and inflate like a balloon.
“I was hoping that the amputation would stabilize my condition, but I think I felt in my heart that my leg would grow back,” Sellars said. “Almost immediately, the bunion started to grow and it became increasingly difficult for me to put on the prosthesis. Soon the bunion became so large that it almost broke the prosthesis,” the woman continues.
The regrowing leg now weighs 19 kg and its circumference reaches one meter.
“It’s easy to see that the size of my legs and feet makes it very difficult for me to walk,” Mandy told the media at the time. “I use crutches around the house and an electric wheelchair outside.”
The woman does not hide the fact that people can be very cruel.
“A few months ago, I was walking in the park with a friend when a group of teenagers on bicycles started staring at me and discussing and teasing me about the size of my feet,” recalls Sellars. “They weren’t just whispering from a distance—they were circling us on their bikes and making loud comments. I want them to experience what it’s like to be teased by strangers. I don’t mind people being interested in my appearance. But when they’re laughing at me and poking my fingers, it’s too much.”
It’s no wonder people are looking at Mandy. One of her legs is larger than a normal man’s torso, and she weighs more than many women. The length of her unamputated right foot is 40 cm, and the width is about 18 cm. The woman’s special footwear is also impressive in size, and it takes weeks to make it. A pair of such shoes costs about 4 thousand US dollars.
“I live alone and take care of myself,” says a woman with a rare disease. “What takes another person only half an hour takes me an hour. For example, just getting dressed in the morning is a huge task for me. Sometimes, by the time I get dressed and can go to the kitchen to have breakfast, I’m almost exhausted. I try to live a normal life, but sometimes it seems impossible. The worst thing is that my mobility is getting worse and worse, and it’s beyond my control.”
Mandy is not alone. She chats with her friends online every day. Before the operation, the woman found the strength to go to the animal shelter once a week to clean rabbit cages. Now Mandy is writing a book about her life.
She was never given an exact diagnosis – doctors only suspected that the woman was suffering from Proteus syndrome.
“But it could also be that this disease will be called Sellars syndrome,” says Sellars, joking that she is the only woman in the world suffering from similar problems.
