Lizzie Velásquez
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Elizabeth Anne Velásquez (; born March 13, 1989) is an American motivational speaker, activist, author, and
YouTuber A YouTuber is an online personality and/or influencer who produces videos on the video-sharing platform YouTube, typically posting to their personal YouTube channel. The term was first used in the English language in 2006. Influence Influe ...
. She was born with an extremely rare congenital disease called
Marfanoid–progeroid–lipodystrophy syndrome Marfanoid–progeroid–lipodystrophy syndrome (MPL), also known as Marfan lipodystrophy syndrome (MFLS) or progeroid fibrillinopathy, is an extremely rare medical condition which manifests as a variety of symptoms including those usually associat ...
that, among other symptoms, prevents her from accumulating
body fat Adipose tissue, body fat, or simply fat is a loose connective tissue composed mostly of adipocytes. In addition to adipocytes, adipose tissue contains the stromal vascular fraction (SVF) of cells including preadipocytes, fibroblasts, vascular e ...
and gaining weight. Her conditions resulted in bullying during her childhood. During her teenage years, she faced
cyberbullying Cyberbullying or cyberharassment is a form of bullying or harassment using electronic means. Cyberbullying and cyberharassment are also known as online bullying. It has become increasingly common, especially among teenagers, as the digital ...
, 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 Austin is the capital city of the U.S. state of Texas, as well as the seat and largest city of Travis County, with portions extending into Hays and Williamson counties. Incorporated on December 27, 1839, it is the 11th-most-populous city ...
. She was born four weeks prematurely and weighed less than 2 pounds 11 ounces (1,219 grams). Velásquez studied at
Texas State University Texas State University is a public research university in San Marcos, Texas. Since its establishment in 1899, the university has grown to the second largest university in the Greater Austin metropolitan area and the fifth largest university ...
Texas Woman Can't Gain Weight, Bullied Over Looks
''ABC News'', September 14, 2012
until late 2012, majoring in communication studies. She is a
Roman Catholic Roman or Romans most often refers to: *Rome, the capital city of Italy * Ancient Rome, Roman civilization from 8th century BC to 5th century AD * Roman people, the people of ancient Rome *'' Epistle to the Romans'', shortened to ''Romans'', a let ...
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 a very rare, previously undiagnosed and non-
terminal Terminal may refer to: Computing Hardware * Terminal (electronics), a device for joining electrical circuits together * Terminal (telecommunication), a device communicating over a line * Computer terminal, a set of primary input and output dev ...
genetic disorder. Her condition bears similarities to many other conditions, especially
progeria Progeria is a specific type of progeroid syndrome, also known as Hutchinson–Gilford syndrome. A single gene mutation is responsible for progeria. The gene, known as lamin A (LMNA), makes a protein necessary for holding the Nucleus of the cell ...
. Medical researchers at the
University of Texas Southwestern Medical Center The University of Texas Southwestern Medical Center (UT Southwestern or UTSW) is a public academic health science center in Dallas, Texas. With approximately 18,800 employees, more than 2,900 full-time faculty, and nearly 4 million outpatient vi ...
previously speculated that it may be a form of
neonatal An infant or baby is the very young offspring of human beings. ''Infant'' (from the Latin word ''infans'', meaning 'unable to speak' or 'speechless') is a formal or specialised synonym for the common term ''baby''. The terms may also be used to ...
progeroid syndrome (NPS) ( Wiedemann-Rautenstrauch syndrome), which does not affect Velásquez's healthy bones, organs, and teeth. Velásquez is medically unable to gain weight, which is a hallmark of her rare disorder.Meet woman who can't gain weight: At 21, she's 60 pounds
''Today Health'' at today.com, July 6, 2010
She has never weighed more than 29 kg (64 lbs), and reportedly has almost 0%
body fat Adipose tissue, body fat, or simply fat is a loose connective tissue composed mostly of adipocytes. In addition to adipocytes, adipose tissue contains the stromal vascular fraction (SVF) of cells including preadipocytes, fibroblasts, vascular e ...
. 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,Lessons from the 'World's Ugliest Woman': 'Stop Staring and Start Learning'
by Lylah M. Alphonse of Yahoo! Shine, September 13, 2012
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
mutation In biology, a mutation is an alteration in the nucleic acid sequence of the genome of an organism, virus, or extrachromosomal DNA. Viral genomes contain either DNA or RNA. Mutations result from errors during DNA replication, DNA or viral repl ...
s in the ''
FBN1 Fibrillin-1 is a protein that in humans is encoded by the ''FBN1'' gene, located on chromosome 15. It is a large, extracellular matrix glycoprotein that serves as a structural component of 10-12 nm calcium-binding microfibrils. These microfib ...
''
gene In biology, the word gene (from , ; "... Wilhelm Johannsen coined the word gene to describe the Mendelian units of heredity..." meaning ''generation'' or ''birth'' or ''gender'') can have several different meanings. The Mendelian gene is a b ...
, which encodes the
proprotein A protein precursor, also called a pro-protein or pro-peptide, is an inactive protein (or peptide) that can be turned into an active form by post-translational modification, such as breaking off a piece of the molecule or adding on another molecule ...
of the novel
hormone A hormone (from the Greek participle , "setting in motion") is a class of signaling molecules in multicellular organisms that are sent to distant organs by complex biological processes to regulate physiology and behavior. Hormones are require ...
asprosin Asprosin is a protein hormone produced by mammals in (white adipose tissue, white adipose) tissues that stimulates the liver to release glucose into the blood stream. Asprosin is Transcription (genetics), encoded by the gene ''FBN1'' as part of the ...
, and that this mutation results in asprosin deficiency and is responsible for their conditions. The condition is specifically called
Marfanoid–progeroid–lipodystrophy syndrome Marfanoid–progeroid–lipodystrophy syndrome (MPL), also known as Marfan lipodystrophy syndrome (MFLS) or progeroid fibrillinopathy, is an extremely rare medical condition which manifests as a variety of symptoms including those usually associat ...
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 in 2015, she hosted a social media challenge for
Bystander Revolution Bystander Revolution is an anti-bullying organization founded in 2014 by billionaire and author MacKenzie Scott, which offers advice about simple things individuals can do to defuse bullying. Its website is an online resource that includes hund ...
'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 a
Redemptorist The Redemptorists officially named the Congregation of the Most Holy Redeemer ( la, links=no, Congregatio Sanctissimi Redemptoris), abbreviated CSsR,is a Catholic clerical religious congregation of pontifical right for men (priests and brother ...
publishing house, Liguori Publications. ''Dare to be Kind'', first published in 2017, is about the importance of being kind, gleaned from her first-hand experience being bullied 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 Hayley Leanne Okines (3 December 1997 – 2 April 2015) was an English author and activist who was a sufferer of the extremely rare aging disease progeria. She was known for spreading awareness of the condition. Although the average life e ...
 — English girl who had progeria and was the subject of television specials both in Europe and in the United States. *
Sam Berns Sampson Gordon Berns (October 23, 1996 – January 10, 2014) was an American activist with progeria, an extremely rare and fatal disease that causes the body to age rapidly. Sam helped raise awareness about the disease and he was the subject of ...
 — American male with progeria who was the only child of the doctors who established the
Progeria Research Foundation The Progeria Research Foundation (PRF) is a non-profit organization dedicated to developing treatments and, ultimately, a cure for progeria, a congenital disorder. The Foundation was established in 1999 by the family and friends of Sam Berns, a chi ...
.


References


External links

* * Velásquez, Lizzie (December 20, 2013)
"How Do YOU Define Yourself Lizzie Velasquez at TEDxAustinWomen"
YouTube YouTube is a global online video sharing and social media platform headquartered in San Bruno, California. It was launched on February 14, 2005, by Steve Chen, Chad Hurley, and Jawed Karim. It is owned by Google, and is the second mo ...
. * Adams, Sam (March 14, 2015)
"Lizzie Velasquez: Woman labelled 'ugliest in the world' by online bullies fights back with film about her life'
''
Daily Mirror The ''Daily Mirror'' is a British national daily tabloid. Founded in 1903, it is owned by parent company Reach plc. From 1985 to 1987, and from 1997 to 2002, the title on its masthead was simply ''The Mirror''. It had an average daily print c ...
''. * Hurst, Samantha (May 14, 2014)
"'The Lizzie Project' Surpasses $180k Goal on Kickstarter"
Crowdfund Insider. {{DEFAULTSORT:Velasquez, Lizzie 1989 births Living people 21st-century American women writers American bloggers Women human rights activists American people with disabilities American motivational speakers Women motivational speakers Blind writers American disability rights activists Writers from Austin, Texas Hispanic and Latino American writers Victims of cyberbullying Texas State University alumni Anti-bullying activists American autobiographers Women autobiographers American women bloggers American women non-fiction writers 21st-century American non-fiction writers Catholics from Texas American blind people Blind activists