She starts the day with corn flakes or a burrito. An hour later, 21-year-old Lizzie Velasquez is already snacking on potato chips or cookies. Soon afterwards, she eats fried chicken with French fries or a pizza. By lunchtime, Velasquez has already consumed about 4,000 calories, as much as the average road worker or miner burns in an entire day.
What 8,000 calories means
The same pattern continues throughout the rest of the day. Velasquez likes it when whatever she has on her plate is covered with plenty of melted cheese. By the time the native Texan goes to bed, the caloric value of the food she has eaten that day corresponds to about 8,000 calories.
The same procedure has repeated itself day after day for years. With that kind of diet, one would image the young woman would be so obese that she could barely leave her home. But the opposite is true. Lizzie Velasquez is so thin that strangers sometimes knock on the door of the family home to angrily inform her parents that they should feed their daughter properly.
Of course, these people have no way of knowing that Velasquez has probably already consumed as much food in her young life as her mother, who is twice her age.
Zero Body Fat
Nevertheless, Velasquez has no fat at all on many parts of her body — which, in her case, literally means zero fat. That is in contrast to, say, bodybuilders who claim to not have a single gram of fat on their body when they still have about 6 to 8 percent body fat.
But because Velasquez, unlike bodybuilders, has hardly any muscle mass either, she looks as if her skin were stretched directly across her skeleton. She walks on stilt-like legs and her handshake is as light as can be. But apart from her extremely low body weight — about 62 pounds (28 kilograms) at a height of 5 foot 2 inches (157 centimeters) — Lizzie Velasquez is doing well. Her condition will not deteriorate as long as she continues to eat enough.
Her metabolism is a mystery. What happens to all the energy from the fast food Lizzie consumes? Doctors don’t know the answer. All they know is that Velasquez is part of a tiny minority on the planet, probably only a handful of people, who can eat as much of whatever they want without gaining weight.
Is the mysterious anomaly a disease, a syndrome, a genetic defect — or even a gift, as Velasquez calls it? Some have already speculated that the body of this young woman from Texas could hold some sort of magical formula — a “thinness gene,” if you will — that many an overweight person would love to have.
Cheeseburgers without Regret
Human metabolism has in fact been thoroughly studied, and nutrition science yields new revelations week after week. They fill the pages of glossy women’s magazines in the form of diet tips, some of which are controversial. Nevertheless, experts still cannot offer a satisfactory explanation of why some gluttons stay thin while less fortunate people gain weight even if they are relatively modest eaters.
Velasquez has girlfriends who envy her for her ability to eat several cheeseburgers in a row without regret. But this form of recognition is relatively new. For most of her life, Velasquez was either ridiculed or pitied because of the way she looks.
Faced with such adversity, she developed a defiant sense of pride. She insists that she wouldn’t want to change anything about her condition, even if there were the prospect of a cure. “The syndrome is worth every negative experience,” she says. “I don’t want to look like everyone else.”
The mysterious ailment has never occurred in her family before. Velasquez’s younger siblings — her brother Chris and her sister Marina — have developed normally. Her parents Lupe and Rita, who are religious, allowed Lizzie to grow up with the knowledge that fate had dealt her a special hand.
This outlook is reflected in the title of a book Velasquez has written: “Lizzie Beautiful.” Not surprisingly, the book’s publication triggered media interest in the emaciated woman.
Too Strong to Die
As a young girl, Velasquez appeared as a guest on several television programs. Some audience members reacted to the hyper-thin child, with her thick glasses, the way visitors to a fair in Victorian London once must have gawked at Joseph Merrick, the severely deformed man known as the Elephant Man. Unable to bear the horrifying otherness they were witnessing, many visitors, then and now, tried to compensate for their discomfort by making absurdly vulgar remarks.
Velasquez already attracted attention at her birth. She weighed 2 pounds, 10 ounces (1,190 grams) and was only 16 inches (40 centimeters) long. “I fit into a small shoebox,” she says. Far more disconcerting was the fact that the newborn had no fatty tissue at all. Her arteries were clearly visible under her skin, and her head resembled that of a crudely carved wooden doll.
Doctors did not think that the little girl would survive. But then, to everyone’s surprise, it turned out that all of her internal organs — lungs, heart, liver and intestines — were fully functional. Apparently Velasquez was too strong to die.
Surprising the Doctors
A detective-like search for the essence of her mysterious ailment began. But the effort was in vain. Doctors couldn’t figure out what the girl lacked.
They told the parents that their daughter would never be able to walk or talk. When Velasquez was four, doctors discovered that she was blind in her right eye. Her vision was also significantly restricted in her left eye.
But Lizzie could walk — and talk. And she did grow. The only problem was that she was unable to gain any weight. The taller she became, the more emaciated she looked.
Lacking answers, the doctors had only one piece of advice for the parents: “Keep an eye on your daughter, and get in touch with us if anything seems strange.”
But everything about her was already strange.
Too Thin to Be Alive
When Lizzie was 13, her mother wrote an account of her daughter’s condition in a medical newsletter, which attracted the attention of Abhimanyu Garg at the University of Texas Southwestern Medical Center in Dallas, who contacted the Velasquez family. Garg, an internist, specializes in the study of diseases relating to human metabolism. Since then, he has paid regular visits to the Velasquez home, keeping track of Lizzie Velasquez’s progress from a medical perspective.
Garg examined the then-adolescent more extensively than any other doctor before him. Velasquez’s bone density was measured using a scanning method called dual-energy x-ray absorptiometry. Garg performed a biochemical analysis of her metabolism and examined her entire body using magnetic resonance tomography. The results showed that Lizzie Velasquez is surprisingly healthy for a young woman who in theory is too thin to be alive.
A body mass index (BMI) value of 20 to 25 is considered normal. Someone with a BMI of less than 16 is considered critically underweight. Velasquez has a BMI of 10.9.
Garg was the first to come up with a name for the strange disorder, calling it neonatal progeroid syndrome (NPS). It is an extremely rare condition that was first described in the mid-1970s by Thomas Rautenstrauch, a German pediatrician.
Rautenstrauch had reported on babies that were severely underweight and with prematurely aged faces, beak-like noses, thin hair and growth disorders. Longer-term observation of the small, horribly disfigured patients was often impossible, because most died in infancy. The few that did grow older soon exhibited a pronounced mental deficiency.
Even though the external symptoms of NPS apply to Velasquez, her brain has developed normally. And at 5 foot 2 inches, she isn’t even particularly short for a woman of Mexican descent.
Taste for Junk Food
The number of NPS cases worldwide ranges from 30 to 60. Velasquez is even unusual within this small group. There are only two other known cases of females in whom the condition has taken a similarly atypical course. Coincidentally, one of them lives in Austin, like Velasquez, and is about 14 years old. The second is a woman in her 30s who lives in Great Britain. Unlike Velasquez, these two women have decided to avoid the public eye.
Probably no other scientist has illuminated the rare syndrome as thoroughly as Abhimanyu Garg. He believes that the disease is genetically determined, although he is unable to name a specific gene that’s involved. Garg also has no hopes for a cure. He doesn’t even know what advice to give a patient like Velasquez to keep herself reasonably healthy.
Meanwhile, her only option is to keep on feasting. “I’m extremely picky when it comes to food,” Velasquez confesses. She never eats salad and doesn’t touch fruit, either. Her eating behavior corresponds to the clichéd image of the US teenager who eats nothing but junk food.
“Thank God I can get away with it,” she says, neglecting to mention the fact that her body, like anyone else’s, also suffers from the effects of unhealthy eating. For example, she recently had to stop drinking soft drinks because her blood sugar levels had become so high.
‘Make Sure She Eats’
Velasquez also largely dismisses the notion that it must be a burden to have to eat three to four times as much as a normal person throughout the day. But sometimes she can’t hide the fact that her high-calorie diet can be tiresome.
“She’s a typical 21-year-old who doesn’t always do what she should,” says Joe Caruso, who helps her with media inquiries. When the two travel together, he has a special responsibility. “This morning Lizzie’s mother said to me: ‘Make sure she eats,'” he says.
Caruso occasionally disappears for a minute, only to return with a piece of cake, which he hands to Lizzie as if it were medicine. She chews without pleasure — as if it really were her medication.
No one can say what actually happens to all the nutrients in Velasquez’s body. In healthy individuals, some of the nutrients would be converted into fat deposits. But the energy in the food she eats apparently does have some effect. When she doesn’t eat, she becomes tired quickly and her immune resistance declines rapidly.
A reporter once wrote that she has to eat a meal every 15 minutes. Nonsense, says Lizzie. It is true, however, that she feels hungry far more often than normal people do. If she ignores the impulse, her energy level soon plummets. Because she has no reserves at all, a lack of food becomes quickly and seriously noticeable.
As a child she often suffered from ear infections — possibly because she wasn’t able to make people understand the importance of her frequent hunger pangs. She often spent weeks at a time in bed, worn out by an ordinary cold.
Hasn’t she ever dreamed of being strong and powerful? “I never really saw a need for that,” she claims. Her mother once sent her to a gym, hoping that Lizzie could lift weights to strengthen her muscles. Garg intervened. His patient perspires heavily during physical exercise and can easily become dehydrated.
Garg is about to repeat all the tests he has already performed on her once before. They are the helpless attempts of a man who faces a mystery he is unable to solve.
‘A Huge Gift’
Lizzie is amused by the idea that she will go down in medical history as a living miracle. She is also aware that she could become a curiosity handed from one doctor to the next. Or she could become a sort of trophy case that brings fame to a particular doctor.
But none of this troubles her. After spending many years in and out of various laboratories and doctors’ offices, she no longer has much faith in anyone solving the mystery. And she repeatedly insists that she isn’t interested in a cure. “This is a gift, a huge gift, an honor,” she says, referring to her disease.
Then it’s time for her to go. She’s tired, and she feels cold.
It’s noon in her native Austin, and the temperature is 40 degrees Celsius (104 degrees Fahrenheit) in the shade.
Full article and photos: http://www.spiegel.de/international/zeitgeist/0,1518,729805,00.html