If You Don’t Know Lizzie Velásquez, You Should…

How would you react if one day you went on YouTube, clicked on a video titled “The World’s Ugliest Woman,” and saw your own face staring back at you?

Become one of the Most Inspiring Individuals

If you’re Lizzie Velásquez, you take those negative comments to fuel your own ambition and become one of the most inspiring individuals online. Velásquez suffers from a rare condition which impacts her vision, immune system, and body. She cannot gain any weight — meaning at 26, she only weighs 58 pounds.

“When I was born, the doctors said we just want to warn you, expect your daughter to never be able to talk, walk crawl, think, or anything by herself,” Velásquez said in a TED talk early last year. Today, she is an author, motivational speaker, and inspiration to victims of bullying everywhere.  So much so that she’s started her own YouTube channel, with over 350,000 subscribers, all who consider themselves her friends and allies.

Velásquez has a condition that is so rare that only two other people are known to have it. She has zero percent body fat and has never weighed more than 64 pounds. Although Velásquez does not have anorexia nervosa, she is unable to gain weight and is required to eat many small meals and snacks throughout the day. Her daily energy intake of about 5,000 calories compares with the US average of 3,770 calories.^[She is blind in her right eye, which began to cloud over when she was four years of age, and has limited vision in the other. She has a weak immune system. Her condition is similar to many other conditions, especially progeria. However, her condition is not terminall. Involved medical researchers at the University of Texas Southwestern Medical Center have expressed the opinion that it may be a form of neonatal proeroid syndrome, which at least has spared her healthy bones, organs, and teeth.

Appearance and Message

She has some progeroid physical characteristics, such as a pointed nose and already aging skin, but she has additional problems beyond that diagnostic classification. Ever since she was dubbed the “world’s ugliest woman” by cyberbullies in a video posted on YouTube, Lizzie Velásquez has spoken out against bullying.

Publications

Her first published work was co-authored (with her mother Rita) and is a self-published autobiography released in 2010 in English and Spanish It is called Lizzie Beautiful: The Lizzie Velásquez Story and has never-before-seen journal entries Lizzie’s mother wrote to Lizzie as a child.

Next Lizzie wrote two inspirational books for teenagers, which share personal stories from her life and offer helpful advice. Be Beautiful, Be You (2012) shares Lizzie’s journey to discover what truly makes us beautiful, and teaches readers to recognize their unique gifts and blessings. That book is also available in Spanish as Sé bella, sé tú misma (2013). Choosing Happiness (2014) talks about some of the obstacles Lizzie has faced in her life, and how she’s learned the importance of choosing to be happy when it’s all too easy to give up.

“Am I going to let the people who called me a monster define me?

“Am I going to let the people who called me a monster define me? Am I going to let the people who said ‘Kill it with fire’ define me?” she said. “No. I’m going to let my goals and my success and my accomplishments be the things that define me. Not my outer appearance.”

Her defiance of those comments — paired with her positivity — fueled her into becoming the inspirational leader she is today. Now, Velásquez is the star of the documentary, A Brave Heart, which tells her story of  bullying, her emotional journey towards self-acceptance, her rise as a motivational speaker, and her efforts lobbying for a federal anti-bullying bill. “All I know is being knocked down and getting back up,” she says in the trailer. “I’m not going to go away until they listen.”

written by Jessica Chou, Refinery 29, April 14, 2015