Lizzie Valesquez's Rare Genetic Disorder Prevents her from Gaining Weight

KC Kelly Ph.D.'s picture

Miss Lizzie Velasquez, 21, from Austin Texas has a very rare and undiagnosed syndrome which makes gaining weight impossible for the young lady, despite how much she eats. Miss Velasquez does not have anorexia, but unfortunately, doctors have not been able to put a name to the disorder. Not even specialist genetic experts could diagnose her weight loss condition.

Having to eat every fifteen minutes just to stay alive cannot be an easy task, but a lifelong struggle that Lizzie Valesquez deals with on a daily basis due to her undiagnosed disorder. But, like any other physical condition needing attention, Velasquez must attend to her needs on an on-going basis and does so by consuming up to sixty meals per day each containing between 5,000 and 8,000 calories daily.

Velasquez, who stands at 5'2" stated, "I weigh myself regularly and if I gain even one pound I get really excited. I eat every 15-20 minutes to keep my energy levels up. I eat small portions of crisps, sweets, chocolate, pizza, chicken, cake, doughnuts, ice cream, noodles and pop tarts all day long, so I get pretty upset when people accuse me of being anorexic" Valesquez wears size triple zero clothes. She cannot seem to escape the looks, the questions and the confusion over her rare disorder.

Born four weeks prematurely weighing just 2lb 10oz., doctors found there was minimal amniotic fluid protecting Valesquez in the womb. Her mother shared that her daughter was not even expected to survive.

Miss Velasquez has fascinated doctors all over the world and she is currently a part of a genetic study run by Professor Abhimanyu Garg, MD, at the University of Texas Southwestern Medical Center in Dallas. It is believed that Velasquez may have a form of Neonatal Progeroid Syndrome (NPS) which causes accelerated aging, fat loss from the face and body, and tissue degeneration. Garg stated, "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 has taken part in writing a book about her life, her rare genetic condition and her experiences in dealing with the disorder and how it affects her and her daily living. The book is slated to be released in September.


Submitted by Donna Hodges (not verified) on
My son Joshua, was born, full term, normal healthy baby boy. Ay age 8, he had his tonsils and adenoids taken out, because his tonsils were always so swollen, he could not hardly swallow. He never got mush bigger, than an 8-10 year old. 5 months after the surgery, his spleen, became enlarged, and te dr's could not find a cause. He always had low platlets. At age 15, about to turn 16, he had developed acides fluid, due to the pressure of his 9 pound spleen, pressing on his organs. They removed it. It turned out that his spleen had been protecting him the whole time, absorbing, his extra white cerlls, to protect his organs. The dr's tentavely, diagnosed, him with Auto Immune Lympho Proliferative Syndrome. Very rare. he became skin and bones, and his white cells eventually proliferated his organs, to where he bled to death, with my hand on his heart, and him, not realzing till the end, that he was dying. The dr's cannot tell me, if it is genetic or from a mutated gene. He passed on Sept 17, 2007. He is my youngest of 4. Bridget is 21, and a senior at UF with a full bright futures scholarship, majoring in communications, through agriculture. My son Jason, 23, finished emt school, and will begin fireman school, in the fall. My oldest son, Justin, is 26, and in the Navy, married, and they just had my first grandchild, Genevieve Fye, on Feb 17, ash wed. His body basically burned all of the fat, in it, and the dr's could not find a cure. He had hundreds of blood transfusions, but it would come all out. He was on continuous dyalisis, for 4 mths. I just wanted to share this with you, and would like to send a picture of him, to show you, what he looked like. The dr's kept saying he was getting better, but he did not. He came to me in a dream, 3 mths, after he passed, in the twilight time, dressed, in a medium blue, silvery satin robe, with a white silvery sash, down the front. He has blonde wavey hair, to his shoulders, and appeared to have a normal size body for a 16 yeard old. His eyes were a dull golen color, instead of blue gree. He had a contented glow, with a silvery cloud background behind him, and different shades of brown shadows of pepole, arounf his feet. He looked ay me contentedly, and without moving his lips, sai: "Mom, I had to go...I am a teaching soul...". I had never heard of teaching souls before the. I believe you are a teaching soul also. I am glad you are doing so much, to teach people about what you are going through. You really do not know any different, because you have been this way your whole life...May God, continue to bless you...;)

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