Sept. 14, 2012— -- Lizzie Velasquez gets a lot of stares. The 23-year-old senior at Texas State University stands 5 feet, 2 inches tall and weighs just 58 pounds.
"I can't gain weight," said Velasquez, describing the rare syndrome that blocks her body from storing fat. As a result, Velasquez is skin and bones despite eating around the clock.
"My stomach is so small that I can't eat that much," she said. "So about 30 minutes after eating I'm ready to eat again. I snack a lot just to keep my energy up."
The cause of Velasquez's syndrome – so rare that it has no name – is a mystery. Only two other people are known to have it, and countless genetic tests have turned up nothing.
"She's missing all of her adipose tissue," said Dr. Atul Chopra, a resident in medical genetics at Baylor College of Medicine in Houston, describing the layer of cells under the skin that plump up with dietary fat. "We just don't know why."
Velasquez was born by emergency C-section weighing just less than three pounds – half of what was expected for the 36-week pregnancy. And ever since, she's been poked, prodded and stared out by dozens of doctors trying to diagnose and treat her mysterious condition.
"Once I got to about age 13, I kind of got tired of it," said Velasquez, who besides her frail frame and blindness in her right eye is surprisingly healthy. "I realized I don't really want a cure for this syndrome. If a doctor found a magic pill or some surgery that would help me gain weight, I wouldn't want it. All the struggles I've had made me who I am today."
Those struggles have been many. Velasquez is still bullied because of her gaunt look, but says her elementary school years were the worst.
"I felt like some sort of monster," she said, recalling her first day of kindergarten. "I never told anyone how bad I was being picked on because I was embarrassed. When I would take a bath at night, that's when I would cry."
Every September, Velasquez's dad, Lupe – a teacher at her school – would stand up in front of her class and say, "This is Lizzie. She's just like you guys, she just looks a little different," Velasquez said. "It was a huge help."
Now Velasquez is using her victory over bullying to inspire others. On top of a full course load, she's penned two books and delivered motivational speeches to young students across Texas. She also made an "It Gets Better" YouTube video with nearly 2.5 million views.
"I tell everyone, 'Even though you don't have my syndrome, you might be able to relate to the struggles I've had,'" she said, explaining how talking about bullying is therapeutic for her, too. "It's kind of the grown-up version of my dad coming to class."
Velasquez's mom, Rita, couldn't be prouder.
"How she has the courage to get up and talk to crowds of people is beyond me because I'm terrified of doing anything like that," she said. "The confidence she has, it just amazes me. Sometimes I'm insecure about the way I look, and she says, 'Mom, don't be that way.'"
In December, Velasquez will graduate and focus all her time on helping others overcome bullying. She maintains that she doesn't want a cure for her syndrome, but adds that she'd love to have a name for it.
"I'd like a diagnosis – a name so I can say, 'this is what I have,'" she said, joking that the syndrome should be named after her.
Velasquez is still participating in some genetic studies with hopes of helping other people with weight-regulation disorders.
"We might be able to find an abnormal gene or set of genes that have not in the past been associated with weight," said Baylor's Chopra, who is currently sequencing Velasquez's genome. "This would not only help Lizzie, but might also be being to people who are obese."
Regardless of what the studies find, Velasquez looks forward to living a long and normal life surrounded by supportive family and friends.
"They often forget I have a syndrome," she said, describing how her girlfriends will distract her from strangers' stares. "They'll say, 'Don't be so into yourself. They're staring at us."