July 1st, 2010
10:34 AM ET

At 60 pounds, woman is unable to gain weight

The latest medical mystery in the news is the story of a 21-year-old Texas college student with a disorder that makes her incapable of gaining weight. Reports that Lizzie Velasquez needs to eat every 15 minutes to survive are inaccurate,  according to her father.  She has a healthy appetite, he says, but does not  eat as frequently as widely reported.

Velasquez, a Texas State University student, says on her website: “What the syndrome causes is that I'm not able to gain weight."  She reportedly weighs around 60 pounds.

“I eat whatever I want all day long and just can't keep the pounds on,” she wrote on her site.

The condition is known as neonatal progeroid syndrome.  There are about 45-50 reported cases worldwide. Neonatal progeroid syndrome is a type of lipodystrophy, a disorder characterized by a selective loss of body fat.

People with lipodystrophy cannot store fat.

“Whatever they are eating goes to the wrong place,” said Dr. Abhimanyu Garg at the University of Texas Southwestern Medical Center in Dallas. “If they eat enough to burn it by muscles, it’s fine.  Usually, all of us, we eat extra fat, and it goes to our fat cells.  When we are starving or exercising, the fat cells release energy, it’s burned by muscle.  Here they don’t have that option. What happens is it goes to their liver or directly to the muscle and puts stress on them.  It damages them.”

In severe cases, children are born without fat on their bodies and look very muscular, he said.  Garg has seen Velasquez, as part of his research on neonatal progeroid syndrome, but did not have permission to speak about her case.

Velasquez was born 2 pounds and 10 ounces, according to her website.  She said she was born so small her clothes were actually doll clothes from Toys "R" Us because those were the only garments that fit her. Watch a video on Velasquez.

The condition is also known as Wiedemann- Rautenstrauch Syndrome, is also characterized by accelerated aging and lipodystrophy from birth.  Children can have severe growth and development problems, eye problems, and facial patterns and loss of fat from the face, extremities.

“They remain thin, the defect is they can’t put fat in their body,” Garg said.  “Whatever it is, they cannot overcome that defect by overeating.”

The first reported case was in 1977, said Garg, who is researching this disorder.

Patients with NPS do not fit one  profile.  They don’t necessarily have to eat more frequently and much about the condition is still unknown, he said.  Some children die very early in childhood, but not enough is known about average life expectancy, Garg said.

The children  have been reported to die from lung complications such as pneumonia or infections.  For reasons unknown, the condition also affects the eyes. Then there are the psychological consequences of the disorder.

“Some are told they have anorexia, but they are in fact eating well, but look like they have anorexia,” Garg said.  “They’re thought to have AIDS and different disorders.”

Scientists are trying to figure out the genetic basis of the disease and identify the gene for NPS.

Velasquez wrote on her blog that she frequently gets asked whether she would ever change her appearance if she could.

“God made me the way I am for a reason and I would never change that,” she wrote.  “I lead a normal life as much as possible and deal with the bumps in the road as they come along with my head held high and a smile on my face!”

soundoff (312 Responses)
  1. Dave

    Bless her heart. Poor thing. She is an inspiration.

    July 1, 2010 at 15:22 | Report abuse | Reply
  2. David

    Sounds like this God thing is really eating at you. I think he loves you and won't leave that mind and heart of yours alone.

    July 1, 2010 at 15:22 | Report abuse | Reply
  3. Susie

    So brave to share your story – you are inspiring to all people with any sort of condition that cause them to be self conscious about their appearance including lipodystrophies. On a different note: one good dessert/snack for anyone with celiac is Gudernoobs made by WooHoo Foods.

    July 1, 2010 at 15:32 | Report abuse | Reply
  4. Clayton

    Wow, that's crazy. I applaud you for being so brave and optimistic about life. I hope all goes well for you in the future.

    July 1, 2010 at 15:33 | Report abuse | Reply
  5. jimmyhoffa

    LOL!!!!!!!!!! PUT A PATCH OVER IT !!!!

    July 1, 2010 at 15:42 | Report abuse | Reply
  6. jim

    LOL !!!!! COVER THAT THING REALLY !!!!!!!!!!!!!! ICK

    July 1, 2010 at 15:43 | Report abuse | Reply
  7. cindy

    Sad disease. I wonder if Drs. could try the reverse of liposuction? Would the fat that is injected be used by the body? Might be worth a try. Just thinking outside the box.

    July 1, 2010 at 15:46 | Report abuse | Reply

    @ herewego: im with you on that one. allllll the non believers will be in total shock. i once heard someone say that they would rather live their life as if there is a God than to live like there isnt only to find out there really is. well I will pray that God continues to bless her and to keep her.

    July 1, 2010 at 16:32 | Report abuse | Reply
  9. Tommy S

    Wow I must start by first commending her for her courage and will to appreciate life as it was given to her. I pray for her and for science to find a cure. This also makes me appreciate what life has been given to me.

    July 1, 2010 at 16:41 | Report abuse | Reply
  10. Steven Stonehill

    If all human beings had just half of this woman's courage and grace the world would be a much happier place.

    July 1, 2010 at 16:44 | Report abuse | Reply
  11. Tommy Sayles

    God bless you I am humbled by your story of courage

    July 1, 2010 at 16:45 | Report abuse | Reply
  12. dwighthuth

    It is a really good country that supports people with these rare condtions. In other parts of the world she would have been taken out into the desert or jungle and left to nature to decide her fate. I think that she should come on CNN and tell her story or maybe even appear on Oprah along with the other people of this small group affected with the disorder. On a lighter note I wonder if science is looking for the gene that causes the discorder so that it can be broken down and used in helping people lose weight. It would be interesting to see science be able to create the gene that in other patients would keep them from gaining weight regardless of what they ate. When they had lost the desired weight a second injection would be given to disable the gene and cause it vanish from the patients body.

    July 1, 2010 at 16:56 | Report abuse | Reply
  13. herewego

    jursey7 you are a knuckle head, Christians would die for God. Who would you die for??????????????

    July 1, 2010 at 16:58 | Report abuse | Reply
    • I'd hit it!

      I'd die for a shot at Lizzie!

      July 2, 2010 at 12:06 | Report abuse |
  14. Don

    Why must religious nutjobs use everything as an opportunity to stuff their backwards voodoo theories down everyone's throats.

    Good on this poor girl for making the best of her life, but i highly doubt she'd turn down the chance to lead a normal life if someone walked up to her with a cure. In fact, she'd be praising the same god she claimed to have inflicted her with this horrible condition. Well, whatever helps her get through the day. She is a brave woman either way, unlike some of the scum here calling her gross. Likely the same imbeciles who want all women to be starving and underweight.

    July 1, 2010 at 17:03 | Report abuse | Reply
  15. JD

    What an amazing woman you are. Honestly, if I were in your situation, I'm not sure that I would have the strength and courage to be so positive about it! I would certianly like to think I could be. It takes a very special kind of person to have the attitude you have. You're such an example to me. Reading about people like you honestly makes me want to be a better person. Kudos to you and the wonderful life you're leading.

    Please don't let the rude, cruel and heartless comments bring you down. I wish there was something I could say that would cause them to consider the reprecussions of the words and statements they are throwing around. I can assure you that if any of them faced difficulties that were even half as hard as what you've probably faced, we'd find they couldn't handle the pressure- much less with a positive attitude and a smile on their face.

    Keep your head up LIzzie. You're an example to us all.

    July 1, 2010 at 17:05 | Report abuse | Reply
    • Chuck

      JD – well said. Lizzie IF by chance you are reading this – remember it is a reflection of how those posting nasty comments feel about themselves and they are projecting it toward you and has nothing to do with you! I wish you well!

      July 1, 2010 at 17:32 | Report abuse |
  16. Tommy Sayles

    I have read over this story more than 5 times already and each time I am humbled and moved by tears for this young lady. Who has so much will and courage, I hope that medicine and science catch up to address disorders such as this. And shame on those for assuming HIV or other diseases. God Bless you and your family.

    July 1, 2010 at 17:09 | Report abuse | Reply
  17. Chuck

    What a brave woman for sharing her story. Best of luck and keep positive Lizzie! Sad when some on here have to be so cruel which isn't necessary at all. It speaks volumes about your character and lack of education. I truly hope you don't have kids so they don't see how you treat others and start doing the same. I guess those who made nasty comments were at one point bullies in school, teased people with disabilities and were cruel all around.

    July 1, 2010 at 17:27 | Report abuse | Reply
  18. Adelay Mostus

    Her attitude is awesome. I'm not sure I could be as upbeat, but she is really someone to learn from and think of when you think things are bad for you.

    I wish her the very, very best!

    July 1, 2010 at 17:32 | Report abuse | Reply
  19. The Test

    If she's so beautiful, would anyone of you imposters consider having sexual intercourse with her????

    July 1, 2010 at 17:50 | Report abuse | Reply
  20. Alina

    2 years ago I read in one English magazine about same problem. One woman used to have it and her doctor thought she is not eating well and every time was giving her more and more fatty diet. She just was getting slimmer and then she went to some other doctor and he made hundreds of difficult analyses and found one virus or something like that and she has been treated. It was in London. But note: that woman was born normal .

    July 1, 2010 at 17:53 | Report abuse | Reply
  21. Stallone

    MAne , to be honest all this pretty lil lady needs is some weed & THC and she"ll get the munchies afterwards an eat her asszzz off ,

    July 1, 2010 at 19:18 | Report abuse | Reply
  22. Inquiring Mind

    I wanna know what's up with that bum eye of hers. She don't look bad for a skeleton, kinda cute really. Her mouth and teeth are normal size, but with that small face, her teeth look like tombstones. All in all, I'd hit it. Look me up there, skeletor!

    July 1, 2010 at 20:47 | Report abuse | Reply
  23. Look on the bright side........

    .........at least she has nice hair.

    July 1, 2010 at 20:48 | Report abuse | Reply
  24. Nutritionist

    My God woman! Chewing your food is fine, but try SWALLOWING. Maybe THAT'S your problem?

    July 1, 2010 at 20:50 | Report abuse | Reply
  25. Fred Norris

    That's okay honey, the one next to you looks like she eats enough for BOTH of you, and THEN some.

    July 1, 2010 at 20:52 | Report abuse | Reply
  26. Holly

    Bless this woman.

    July 2, 2010 at 03:16 | Report abuse | Reply
  27. MIck'sMom

    There are some sick people on here. All I can say is that you would feel differently if this were one of your loved ones. I hope you all stay as perfect as you think you are and get your laughs at the expense of those who are suffering.

    July 2, 2010 at 07:57 | Report abuse | Reply
  28. Huge1

    I'd hate to get a BJ from that! I'd rather stick it in a shark's mouth!

    July 2, 2010 at 09:33 | Report abuse | Reply
    • I'd hit it!

      Still not as bad as a meat grinder. I'll NEVER do THAT again.

      July 2, 2010 at 12:07 | Report abuse |
  29. Glen Quagmire

    Ya know, I'll bet she's a freak in bed. She's probably so happy to be gettin some, she'd do ANYTHING! Giggity-giggity. I'd dress her up like a little 11 year old and play JC Dugard!

    July 2, 2010 at 09:35 | Report abuse | Reply
  30. steav

    poked with bones while boning.

    July 2, 2010 at 10:40 | Report abuse | Reply
  31. Glen Quagmire

    I think she's kinda of attractive in a wierd, grotesque way. Maybe pop out that cloudy eye and replace it with a nice glass one, file those tombstone teeth down a little, maybe some implants, this girl would have it all goin on. I wonder what kind of shape her vajayjay is in?

    July 2, 2010 at 12:02 | Report abuse | Reply
  32. ivanskie

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    August 5, 2010 at 16:22 | Report abuse | Reply
  33. ivanskie

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    August 6, 2010 at 05:59 | Report abuse | Reply
  34. Joe C.

    Lizzie Beautiful: The Lizzie Velasquez Story is now
    available on amazon.com

    Lizzie shares intimate details about her struggles of living in a society that places great emphasis on outer appearance. Also, read never-before-seen journal entries Lizzie's mother wrote to Lizzie as a child. Lizzie gives you reasons to find hope and faith that can be infused into everything you do, so that you too – can achieve your dreams.

    August 12, 2010 at 13:54 | Report abuse | Reply
  35. Humans are Ignorant

    Um people who don't believe you don't have to thats all fine and dandy but don't go choppin down other's beliefs because there is nothing you believe in if you ask me the world is filled with nothin but hypocrites priest having sex with children churches commiting violent acts its all hypocritical if you ask me

    September 13, 2010 at 21:54 | Report abuse | Reply
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    December 29, 2010 at 10:43 | Report abuse | Reply
  37. test

    She is probably alergic to something but does now know it. I had a similar problem, I found it the problem before it got that bad. I'm alergic to GUAR GUM and Milk. All this talk about she eats so much, but where does it go, diarrea probably. Fix the alergy problem, then slowly your gut will heal. Takes time.

    April 8, 2011 at 10:29 | Report abuse | Reply
  38. sample

    I am also like her, but I weigh 110 pounds. People keep saying I should eat better but I am unable to increase my weight by eating more. But I have increased my weight by exercising and increasing my muscles and bone weight. I weighed 145 ponds at one point. But once I stopped exercising my weight went back to 110.

    October 5, 2011 at 11:34 | Report abuse | Reply
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