“I weigh myself every day. If I gain a pound, I get really excited”
Originally published 22 June 2010;
But the 21 year old – who must eat every 15 minutes to stop her collapsing – was born with a rare syndrome that prevents her from gaining weight. Her doctors can’t find a name for her condition, and they believe she may be one of only three people worldwide who suffer from it.
It requires Lizzie to eat four times the recommended 2,000 calories a day for women. She has such a fast metabolism that she burns off calories immediately, and her BMI is just 11.3 – that’s far lower than the healthy range of 18.5-25.
“I weigh myself every day. If I gain a pound, I get really excited,” says 5ft 2 Lizzie, who gets her clothes from special websites, or buys clothes to fit an eight year old.
“If I don’t eat every 15 minutes or so, I feel completely exhausted,” Lizzie adds. “Sometimes,
I don’t even have the strength to stand. I eat crisps, sweets, chocolate, pizza, fried chicken, cake, doughnuts, ice cream, pop tarts and noodles all day long, so I get angry when people accuse me of being anorexic.
“When I meet people for the first time, I have to say: ‘Hi, I’m Lizzie and I have this rare syndrome, I am NOT anorexic.’
“Strangers often rant at me. Recently, a man started yelling: ‘Go and eat something, you are so ugly. Why don’t you just eat?’
“It hurts, and it makes me angry, but I’ve learnt to stand up for myself more.”
Apart from potatoes and the odd snack of strawberries, bananas or apples, Lizzie avoids fruit and vegetables like the plague.
“They don’t fill me up,” she says. “I can eat a whole pizza and be hungry 10 minutes later. A salad wouldn’t even touch the sides.”
Despite her high-calorie, junk food-based diet, Lizzie doesn’t suffer from cholesterol problems, and the sugary foods haven’t affected her teeth. She says: “I go for regular check-ups with my doctor and dentist, and they say I’m OK.”
Lizzie is a student and lives in Texas with her two best friends from university.
“I don’t have much money, but I spend about three times what my friends do on food,” she says. She buys cheap brands but still spends £100 a week on food shopping.
Lizzie was born four weeks prematurely, weighing just 2lbs 2oz, and doctors didn’t think she would survive.
“My parents had to buy dolls’ clothes for me,” says Lizzie, whose brother, Chris, 12, and sister, Marina, 15, are average- sized, as are their parents Rita and Lupe, both 45.
Despite pulling through, Lizzie gained weight extremely slowly. By the age of two, she only weighed 15lbs – that’s the same as an average five-month-old baby.
“Doctors knew there was something wrong with me, because I was growing but not gaining weight,” says Lizzie, who was bottle-fed with breast milk in normal quantities for a child of her age.
“They diagnosed me with a couple of disorders and then changed their minds, because my brain and organs were fine.”
Lizzie had hundreds of medical tests, but the results were inconclusive.
“They just couldn’t figure out what was wrong with me,” she says.
Lizzie became blind in her right eye when she was four, although doctors don’t know why. But it was only when she started nursery school, aged five, that she realised she was different from other children.
“I went over to play with a little girl and she looked at me like I was a monster,” she recalls. “For years the other kids teased me, calling me ‘Skinny Bones.’ I’d never cry at school but every night I’d come home and cry, and pray I’d wake up looking normal.”
When Lizzie was six, doctors began encouraging her to eat as much fat, carbs and sugar as possible.
“The doctors told me to ‘just go for it’ and eat anything I wanted. Also, they said I was never to leave more than 15 minutes between snacks,” says Lizzie, although she doesn’t have to eat during the night.
“At school, I’d munch all day long. I had permission to eat during classes, and that made some of the other kids jealous. They’d be hungry before lunch and I’d be munching on a sugared doughnut!”
Aged 12, Lizzie bravely appeared on an American TV talk show to raise awareness of her condition. Devastatingly, a stranger took a clip of her while she was on the show and posted it on the internet, branding her “The Ugliest Girl Alive.”
“When I saw that, I just cried and cried,” Lizzie says.
In secondary school, Lizzie made lots of good friends and gradually came to accept her appearance.
Unfortunately, she has a weak immune system, and she was in and out of hospital throughout her teens.
“When I was 16, I almost died when my appendix ruptured,” Lizzie says. “At 19,
I had to have a massive blood transfusion. My blood cells weren’t multiplying properly and I was critically anaemic.
I was so weak I couldn’t get out of bed.”
Lizzie doesn’t take any medication because doctors don’t know what to prescribe for her condition, but she does take vitamin supplements and iron to stay healthy.
Despite everything, Lizzie still manages to lead an active social life.
“I do all the things my friends do – shopping, movies and parties,” she says.
“You’d think I’d get drunk on a thimbleful of booze, but I can actually hold my alcohol quite well. And I’m not that fragile, either! Some people are scared to touch me. I have to say: ‘You can hug me, I’m not going to snap, I promise.’ ”
Lizzie hasn’t had any serious boyfriends yet, but she has lots of male friends who, she says, are very protective of her.
“I’m single at the moment, but I’d like to fall in love and start a family one day,” she says. She has normal periods and has been told she should be able to conceive naturally and is unlikely to pass her condition on to her children.
“I’m looking forward to getting pregnant, so I can look a bit fatter,” she smiles. “I might topple forward from the weight, though!”
Lizzie's doctors predict that if she keeps eating, she should be able to look forward to a normal future.
“I’m happy the way I am. This syndrome has made me who I am. Even if they invented some crazy surgery to give me fat, I wouldn’t do it,” she says.
Lizzie hopes to become a motivational speaker when she graduates. “I’ve already started giving talks in schools and colleges,” she says. “I want to make a difference in people’s lives and show them that you can get through most hardships if you’re strong, positive and have a sense of humour.” n
By Isla Harvey