Lizzie Velasquez was born without any adipose tissue, meaning she does not have body fat and cannot gain weight. The 23-year-old reveals she has been bullied by strangers online. Despite this she says she would not want to look like a beautiful celebrity. She has been ridiculed, stared at in the street and called 'the world's ugliest woman' by insensitive cyber bullies.
But, after years of misery and self doubt, Lizzie Velasquez says she can finally shrug off the hurtful comments about her looks as 'just words'. Miss Velasquez, from Austin, Texas, was born without adipose tissue - meaning she has no body fat and, despite eating up to 60 small meals a day, remains at a delicate 4.4stone (58lbs).
Battle: Lizzie Velasquez says she has had to face being stared at and bullied because of her unusual looks
The rare condition still baffles doctors and is thought to affect just two other people worldwide. Miss Velazquez has now written a second book about her struggle to be accepted and hopes it will help others in a similar position.
In Be Beautiful, Be You the 23-year-old college senior shares advice on being unique, how to make and keep good friends and how to deal with bullying and negativity. Speaking to Dr Drew Pinsky on Tuesday night about her experiences, Miss Velasquez said when cyber bullies first started attacking her online it was hard.
Rare: Miss Velasquez was born without any adipose tissue, meaning she has no body fat and, despite eating up to 60 small meals a day, remains at a delicate 4.4stone (58lbs)
THE SYNDROME SO RARE IT REMAINS UNDIAGNOSED
Lizzie Velasquez was born without adipose tissue, meaning she has no body fat and, despite eating up to 60 small meals a day, remains at a delicate 4.4stone (58lbs). Her syndrome is so rare that to this day it remains undiagnosed. Besides Miss Velasquez there are only two other people in the world known to suffer from the condition. The main symptom is the inability to gain weight. Miss Velasquez is also blind in one eye and has limited vision in the other.
The 23-year-old says her condition is particularly puzzling because it takes on aspects of other syndromes, including progeria. Miss Velasquez says she has the pointed nose, small mouth and ageing skin of someone with progeria but her syndrome is not though to be terminal. As she says on her website her condition is 'just one big mystery', but she remains hopeful that one day doctors will discover just what it is and how to treat it.
She told Dr Drew: 'I'm human... of course these things are going to hurt... (but) I'm not going to let those things define me.'
Eventually Miss Velasquez realised the people issuing the hurtful comments online were just cowards hiding behind a computer screen.
'At the end of the day, these are just words,' Miss Velasquez told Dr Drew. 'If they are so proud, then they should show their face.'
When asked how she deals with being constantly stared at in the street Miss Velasquez said: 'I'm starting to want to go up to these people and introduce myself or give them my card and say, "Hi, I'm Lizzie - maybe you should stop staring and start learning".'
Miss Velasquez also revealed she does not have any desire to look like a beautiful celebrity. She said: 'I feel I'm really glad I don't look like the celebrities out there who are beautiful, because there are a lot of stereotypes attached to that.
'People think "she's so pretty, she must be really dumb". Since I don't look like that it's better because people can get to know the real me.'
Miss Velasquez was born four weeks prematurely weighing just 2lb 10oz. Doctors found there was minimal amniotic fluid protecting her in the womb. 'They told us they had no idea how she could have survived,' Miss Velasquez's mother Rita, 45, a church secretary, said.
Dinner: Miss Velasquez says she has to eat high calorie food every 15-20 minutes to keep her energy level high
'We had to buy dolls' clothes from the toy store because baby clothes were too big.' Doctors could not make a diagnosis so they prepared Miss Velasquez's parents for the worst.
'They told us she would never be able to walk, talk or have a normal life,' said her mother, who has two other children with Miss Velasquez's father Lupe - both children are of average height and weight. Despite the grim prognosis Miss Velasquez's brain, bones and internal organs developed normally but she was always very small.
At the age of two she was still only 15lbs - the same as the average five-month-old baby.
Born this way: Miss Velasquez, aged two, (left) and pictured a couple of years ago, right. The university student has never weighed more than 4.3stone. She went blind in one eye aged four
Born with two brown eyes, when Miss Velasquez was four the right began to cloud and change hue. Doctors then discovered she had gone blind in that eye.
'They still don't know why it happened but now I have one blue and one brown eye.'
Miss Velasquez's case has fascinated doctors all over the world and she is part of a genetic study run by Professor Abhimanyu Garg at the University of Texas Southwestern Medical Center in Dallas.
Support: Miss Velasquez with her supportive family, mother Rita, father Lupe, brother Chris and sister Marima. No one else in her family has the syndrome
Professor Garg and his team now believe Miss Velasquez may have a form of Neonatal Progeroid Syndrome (NPS), which causes accelerated ageing, fat loss from the face and body, and tissue degeneration. People with PRS often have triangular and prematurely aged faces with a pointy nose. He said: 'I am aware of a small number of people that have similar conditions to Lizzie but each case is slightly different.
'We cannot predict what will happen to Lizzie in the future, as the medical community are yet to document older people with NPS.
'However Lizzie is lucky to have healthy teeth, organs and bones so the outlook is good. We will continue to study her case and learn from her.'
Miss Velasquez doesn't take medication but she relies on vitamin supplements and iron to stay healthy. It is thought she should be able to conceive naturally without passing the condition to her children.
Her new book is out on September 13.
