Proteus Syndrome; A woman with giant legs
August 20th, 2008 - 2:32 pm ICT by Bupha Ravirot
- Mandy Sellars, from Accrington, Lancs, has been living with difficulties dragging her giant legs around which keep on expanding since she was born – without being told what causes her legs huge, the doctor said her only option is a drastic amputation.
Mandy Sellars has hugely outsized legs, over 4 times bigger than normal woman leg that make her living normal life difficult throughout 33 years. Embarrassment when people stare, point and laugh even made it harder for her to survive but she got through that.
“And people can be very cruel. I was in a park a few months ago when a group of teens started pointing at me, they were saying to each other, ‘Look at the size of her legs.’ Mandy said.No wonder why most of the people people stare. Mandy’s legs are wider than the average man’s waist and heavier than most women, while her body is still small.
Her left leg is five inches longer than her right and has a clubfoot, which has turned 180 degrees backwards. She says: “I weigh about 20 stone – 15 of which are my legs.”
“I don’t mind curiosity – it’s the laughing and nudging that gets to me. ” added she.
Mandy described how she manage with the difficulties of her daily life routine;
“I use an electric wheelchair when I go out,” says Mandy.
“I live alone and what takes the average person half an hour takes me an hour, if not longer. Just getting dressed in the morning is a mammoth task.
“By the time I go into the kitchen to get breakfast, I can be exhausted. I can’t just pop to the shops, it all has to be planned.”
Mandy never have had a firm diagnosis, but it could be linked to Proteus syndrome, which causes abnormal skin and limb growth. John Merrick, the Elephant Man, is believed to have had it.
Mandy spent her childhood life as other kids do. She learnt how to ride a bike, go to school and college and hang out with her peers. After college Mandy went to the University of Central Lancashire where she gained a BSc in psychology. As her legs get heavier they’ll put a strain on her heart and internal organs.
TV production company contacted Mandy and said it wanted to make a documentary about her life, and take her to meet US specialists, she didn’t hesitate to say yes.
She met US renowned orthopedic surgeon Dr William Ertl and prosthetic whizz Kevin Carroll. They worked together on many challenging cases. This gives her hope not to go for amputation.
Extraordinary People – The Woman With Giant Legs, is going to be aired on Thursday (August 21), at 9pm .
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November 7th, 2008 at 4:31 pm
Mandy Sellars should watch “Soul Masters: Dr. Guo & Dr. Sha”(Amazon.com). She can be cured without surgery.
December 31st, 2008 at 2:11 pm
I just saw Mandy’s story on TLC. They mentioned in the program that her legs are mostly fatty tissue. Please forgive me if this sounds silly…but if that is so, why couldn’t her Doctors try some sort of “lipo-suction” or something of that sort to help relieve her of some of the weight. OR…if she is still considering amputation and one of the worries was the size of the stumps she would be left with…why not try some sort of “lipo-suction” or reduction before amputation…possibly leaving her with a smaller stump and then possibly making it easier for her Doctors to fit her for prosthetics?
Mandy…may God Bless you and continue to give you the incredible strength you have!
January 14th, 2009 at 4:07 am
Dear Mandy,
I saw your story a while back on Television. I am a 31 year old ordained minister of the Good News of Jesus Christ, who was set free 9 years ago from drugs and alcohol. One life that gives me great hope is the woman witht the issue of blood in the Bible. She tried everyting in her own power to be healed. She spent all she had on doctors and grew worse. But she said, “If I can jsut touch the hem of Jesus’ garmet, I know I will be whole.” She did and her faith landed in Jesus landed her a miracle. I am a living testimony of the miracles of God. My husband and I have both been healed of cancer and blood diseases, in which there was no cure for, by the healed power of Jesus Christ. Be encouraged by God’s Word. He can and wants to heal you! Wrap your faith in Him and surround yourself in His Word. God Bless You Mandy!
February 9th, 2009 at 4:36 pm
Is there an email for Mandy Sellers? I would like to give her my best wishes for a hard decision and hopeful wish that she will be able to find what she is looking for. I hope she can walk after her surgery if its possible for her to get the amputation.
April 14th, 2009 at 5:15 am
I was wondering also if anyone can get her Email address. I would like to personally tell her what a great person she is.
June 12th, 2009 at 4:33 am
Wish you all the best
June 12th, 2009 at 8:21 pm
Dear Mandy,
I would like to wish you all the very success for your future, alot of people would of gone for the option of amputation but you have shown the world just how strong and independent you are and I have alot of respect for such a strong person you are,
I wish you all the luck for your future
Take care
Jo
July 7th, 2009 at 7:14 am
Has anyone thought that liposuction could be used to reduce the size/weigtht of Mandy’s legs. Like theraputic Phlebotomy for persons that produce to much blood. Could Mandy under go liposuction a few pounds at a time to reduce size and weight? And could help if amputaion was done to reduce size so she could be fitted better for a prosthetic.
December 16th, 2009 at 11:21 pm
Wish you all the best!!
be strong!!
Take care..