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  • 21 Aug, 2019

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Lizzie Velásquez
Elizabeth Anne Velásquez (/ˈlɪzi vəˈlæskɛz/; born March 13, 1989) is an American motivational speaker, activist, writer, and YouTuber. She was born with an extremely rare congenital disease called Marfanoid–progeroid–lipodystrophy syndrome that, among other symptoms, prevents her from accumulating body fat and gaining weight. Her conditions resulted in bullying during her childhood. During her teenage years, she faced cyberbullying, which ultimately inspired her to take up motivational speaking.

Early life

The eldest of three children born to Rita and Guadalupe Velásquez, Lizzie was born on March 13, 1989, in Austin, Texas. She was born four weeks prematurely and weighed less than 2 pounds 11 ounces (1,219 grams).

Velásquez studied at Texas State University until late 2012, majoring in communication studies. She is a Roman Catholic and has said of her faith, "It's been my rock through everything, just having the time to be alone and pray and talk to God and know that He's there for me."

Condition

Velásquez's condition is an extremely rare, previously undiagnosed, and non-terminal genetic disorder. Her condition bears similarities to many other conditions, especially progeria. Medical researchers at the University of Texas Southwestern Medical Center previously speculated that it may be a form of neonatal progeroid syndrome (NPS) (Wiedemann-Rautenstrauch syndrome), which does not affect Velásquez's healthy bones, organs, or teeth.

Velásquez is medically unable to gain weight, which is a hallmark of her extremely rare disorder. She has never weighed more than 29 kg (64 lbs), and reportedly has almost 0% body fat. Moreover, she is required to eat many small meals and snacks throughout the day, averaging between 5,000 and 8,000 calories daily. Additionally, she is blind in her right eye, which began to cloud over when she was four, and she is vision-impaired in her left eye.

Around 2015, it was revealed that Velásquez and another woman named Abby Solomon, with a similar but less severe variant of the condition, have mutations in the FBN1 gene, which encodes the proprotein of the novel hormone asprosin, and that this mutation results in asprosin deficiency and is responsible for their conditions. The condition is specifically called Marfanoid-progeroid-lipodystrophy syndrome, or simply Marfan lipodystrophy syndrome.

Career

Ever since she was dubbed the "World's Ugliest Woman" in a video posted on YouTube in 2006, when she was 17, Velásquez has spoken out against bullying. In January 2014, she gave a TEDxAustinWomen Talk titled "How Do YOU Define Yourself", and her YouTube videos have received over 54 million views. She is known for her optimism. For National Bullying Prevention Month in 2015, she hosted a social media challenge for Bystander Revolution's Month of Action.

Her first work, co-authored with her mother, Rita, is a self-published autobiography published in 2010 in English and Spanish. It is called Lizzie Beautiful: The Lizzie Velásquez Story, and includes letters Velásquez's mother wrote to her as a child.

Velásquez has also written two books directed at kids, which share personal stories and offer advice. Be Beautiful, Be You (2012) shares her journey "to discover what truly makes us beautiful, and teaches readers to recognize their unique gifts and blessings". The book is also available in Spanish as Sé bella, sé tú misma (2013). Another book, Choosing Happiness (2014), talks about some of the obstacles Velásquez has faced and how she "learned the importance of choosing to be happy when it's all too easy to give up". Both books were published by Liguori Publications, a Redemptorist publishing house.

Dare to be Kind, first published in 2017, is about the importance of being kind, gleaned from her firsthand experience being bullied, both personally and online.

A documentary film titled A Brave Heart: The Lizzie Velásquez Story premiered at SXSW on March 14, 2015. The movie aired on Lifetime on October 17, 2016.

Velásquez began starring on her own Fullscreen original series titled Unzipped since April 2017.

See also

  • Hayley Okines — English girl who had progeria and was the subject of television specials both in Europe and in the United States.
  • Sam Berns — American male with progeria who was the only child of the doctors who established the Progeria Research Foundation.

References

  1. ^ "Once bullied, now empowered, Lizzie Velasquez lobbies Capitol Hill". The Washington Post.
  2. ^ "Anti-bullying activist Lizzie Velasquez will share story of her journey". Brentwood Home Page. April 7, 2017. Retrieved January 16, 2019.
  3. ^ "'Ugliest woman in the world' teaches about true beauty (September 19, 2012 by Paloma Corredor; published on voxxi.com)". Archived from the original on March 14, 2013. Retrieved February 7, 2013.
  4. ^ "Texas Birth Record search for Elizabeth Velasquez". Myheritage.com. Archived from the original on January 11, 2014.
  5. ^ "Lizzie Velásquez". www.goodreads.com. Retrieved September 8, 2020.
  6. ^ Texas Woman Can't Gain Weight, Bullied Over Looks ABC News, September 14, 2012
  7. ^ Allen Reed (December 3, 2009). "Lizzie's Story". University Star. Retrieved December 17, 2016.
  8. ^ Walker, Ken (December 31, 2013). "'World's Ugliest Woman' Proves That Jesus Makes All Things Beautiful". Charisma. Retrieved June 28, 2016. Raised in the Catholic parish where both her parents work, Velasquez's decision to follow Christ came near the end of high school. She credits her faith with enabling her to endure everything from scorn to physical infirmities. "It's been my rock through everything, just having the time to be alone and pray and talk to God and know that He's there for me," she says.
  9. ^ Collier, Myles (January 7, 2014). "Lizzie Velasquez, Once Labeled World's Ugliest Woman, Using Faith in Jesus to Spread Message of Love and Tolerance (VIDEO)". The Christian Post. Retrieved June 28, 2016.
  10. ^ Hart, Lucinda van der (2014). "Lizzie Velasquez". Premier Christianity. Retrieved June 28, 2016. I was born and raised in the Catholic faith and my parents have always been very involved in church and volunteering. It was always my dad's way of wanting to say to God, 'We will be as close as we can with you, volunteer and do what we can, as long as you help keep Lizzie healthy.' And so we did that our whole lives.
  11. ^ Hartenstein, Meena. "Lizzie Velasquez, 30-year-old with undiagnosed genetic disorder, must eat 60 times a day to survive". New York: New York Daily. Retrieved June 23, 2013.
  12. ^ Freeman, David (June 29, 2010). "Girl Must Eat Every 15 Minutes: Lizzie Velasquez Stays Skeletal Despite Nonstop Eating". CBS News. Retrieved March 14, 2015.
  13. ^ Meet woman who can't gain weight: At 21, she's 60 pounds Today Health at today.com, July 6, 2010
  14. ^ How Do YOU Define Yourself Lizzie Velasquez at TEDxAustinWomen, December 20, 2013
  15. ^ "The girl who must eat every 15 minutes to stay alive". The Telegraph. June 28, 2010. Lizzie Velasquez weighs just four stone and has almost zero per cent body fat but she is not anorexic. [...] Despite consuming between 5,000 and 8,000 calories daily, the communications student, has never tipped over 4st 3lbs.
  16. ^ Lessons from the 'World's Ugliest Woman': 'Stop Staring and Start Learning' by Lylah M. Alphonse of Yahoo! Shine, September 13, 2012
  17. ^ Velasquez, Lizzie. "About Lizzie".
  18. ^ Bordo, Sara (Director); Campo, Michael (Writer); Velasquez, Lizzie (Star) (2015). A Brave Heart: The Lizzie Velasquez Story. Event occurs at 45:50 to 50:36.
  19. ^ Kennedy, Pagan (November 25, 2016). "The Thin Gene". The New York Times. Retrieved May 22, 2017.
  20. ^ Graul-Neumann LM, Kienitz T, Robinson PN, Baasanjav S, Karow B, Gillesen-Kaesbach G, Fahsold R, Schmidt H, Hoffmann K, Passarge E (2010). "Marfan syndrome with neonatal progeroid syndrome-like lipodystrophy associated with a novel frameshift mutation at the 3-prime terminus of the FBN1-gene". Am. J. Med. Genet. 152A (11): 2749–2755. doi:10.1002/ajmg.a.33690. PMID 20979188. S2CID 26408208.
  21. ^ Jacquinet A, Verloes A, Callewaert B, Coremans C, Coucke P, De Paepe A, Kornak U, Lebrun F, Lombret J, Pierard GE, Robinson PN, Symoens S, Van Maldergem L, Debray FG (2014). "Neonatal progeroid variant of Marfan syndrome with congenital lipodystrophy results from mutations at the 3' end of FBN1 gene". Eur. J. Med. Genet. 57 (5): 230–234. doi:10.1016/j.ejmg.2014.02.012. PMID 24613577.
  22. ^ "How do you define yourself? - Lizzie Velasquez at TEDxAustinWomen". TED. Archived from the original on August 9, 2016.
  23. ^ "Lizzie Velasquez". YouTube (website report of video views). Archived from the original on October 25, 2016.
  24. ^ Velasquez, Lizzie. "Be Beautiful, Be You". Liguori.org. Liguori Publications. Retrieved April 7, 2015.
  25. ^ Velasquez, Lizzie. "Sé bella, sé tú misma". Liguori.org. Liguori Publications. Retrieved April 7, 2015.
  26. ^ Velasquez, Lizzie. "Choosing Happiness". Liguori.org. Liguori Publications. Retrieved April 7, 2015.
  27. ^ "Lizzie Velasquez's Challenge: Born Beautiful". Bystander Revolution. October 22, 2015. Retrieved April 20, 2016.
  28. ^ "Lizzie Beautiful". www.goodreads.com. Retrieved February 22, 2019.
  29. ^ "Dare to Be Kind: How Extraordinary Compassion Can Transform Our World". publishersweekly.com. PWxyz, LLC. Retrieved November 6, 2017.
  30. ^ Hawkins, Kathleen (March 14, 2015). "'Bullies called me the world's ugliest woman online'". BBC News. Retrieved March 14, 2015.
  31. ^ "No More Bullying: Lizzie Velasquez Has New Show About Body Positivity". Rare Disease Report. Retrieved February 22, 2019.
  32. ^ Unzipped with Lizzie Velasquez, retrieved February 22, 2019
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