Lizzie Velásquez
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Elizabeth Anne Velásquez (; born March 13, 1989) is an American
motivational speaker A motivational speaker (or inspirational speaker) is a speaker who makes speeches intended to motivate or inspire an audience. Such speakers may attempt to challenge or transform their audiences. The speech itself is popularly known as a pep ta ...
, activist, writer, and
YouTuber A YouTuber is a content creator and social media influencer who uploads or creates videos on the online video-sharing website YouTube, typically posting to their personal YouTube channel. The term was first used in the English language in 2006 ...
. She was born with an extremely rare congenital disease called Marfanoid–progeroid–lipodystrophy syndrome that, among other symptoms, prevents her from accumulating
body fat Adipose tissue (also known as body fat or simply fat) is a loose connective tissue composed mostly of adipocytes. It also contains the stromal vascular fraction (SVF) of cells including preadipocytes, fibroblasts, Blood vessel, vascular endothel ...
and gaining weight. Her conditions resulted in bullying during her childhood. During her teenage years, she faced
cyberbullying Cyberbullying (cyberharassment or online bullying) is a form of bullying or harassment using electronic means. Since the 2000s, it has become increasingly common, especially among teenagers and adolescents, due to young people's increased u ...
, 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 List of capitals in the United States, capital city of the U.S. state of Texas. It is the county seat and most populous city of Travis County, Texas, Travis County, with portions extending into Hays County, Texas, Hays and W ...
. 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 (TXST) is a public university, public research university with its main campus in San Marcos, Texas, United States, and another campus in Round Rock, Texas, Round Rock. Since its establishment in 1899, the university has ...
Texas Woman Can't Gain Weight, Bullied Over Looks
''ABC News'', September 14, 2012
until late 2012, majoring in
communication studies Communication studies (or communication science) is an academic discipline that deals with processes of human communication and behavior, patterns of communication in interpersonal relationships, social interactions and communication in differ ...
. She is a
Roman Catholic The Catholic Church (), also known as the Roman Catholic Church, is the largest Christian church, with 1.27 to 1.41 billion baptized Catholics worldwide as of 2025. It is among the world's oldest and largest international institut ...
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 Terminal may refer to: Computing Hardware * Computer terminal, a set of primary input and output devices for a computer * Terminal (electronics), a device for joining electrical circuits together ** Battery terminal, electrical contact used to ...
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 or Hutchinson–Gilford progeroid syndrome (HGPS). A single gene mutation is responsible for causing progeria. The affected gene, known as lamin A ( ...
. 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 23,000 employees, more than 3,000 full-time faculty, and nearly 4 million outpatient ...
previously speculated that it may be a form of
neonatal In common terminology, a baby is the very young offspring of adult human beings, while infant (from the Latin word ''infans'', meaning 'baby' or 'child') is a formal or specialised synonym. The terms may also be used to refer to Juvenile (orga ...
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.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 (also known as body fat or simply fat) is a loose connective tissue composed mostly of adipocytes. It also contains the stromal vascular fraction (SVF) of cells including preadipocytes, fibroblasts, Blood vessel, vascular endothel ...
. 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 or viral replication, ...
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 micro ...
''
gene In biology, the word gene has two meanings. The Mendelian gene is a basic unit of heredity. The molecular gene is a sequence of nucleotides in DNA that is transcribed to produce a functional RNA. There are two types of molecular genes: protei ...
, 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 Ancient Greek, Greek participle , "setting in motion") is a class of cell signaling, signaling molecules in multicellular organisms that are sent to distant organs or tissues by complex biological processes to regulate physio ...
asprosin Asprosin is a fasting-induced hormone encoded by the ''FBN1'' gene and derived from the cleavage of the fibrillin-1 protein, a structural component of the extracellular matrix. It is primarily produced and secreted by white adipose tissue. As a per ...
, 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 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 The Redemptorists, officially named the Congregation of the Most Holy Redeemer (), abbreviated CSsR, is a Catholic clerical religious congregation of pontifical right for men (priests and brothers). It was founded by Alphonsus Liguori at Scal ...
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 South by Southwest (SXSW) is an annual conglomeration of parallel film, interactive media, and music festivals and Convention (meeting), conferences organized jointly that take place in mid-March in Austin, Texas. It began in 1987 and has conti ...
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 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. Berns helped raise awareness about the disease, and he was the subject ...
 — 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 nonprofit organization, 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 fri ...
.


References


External links

* * * Velásquez, Lizzie (December 20, 2013)
"How Do YOU Define Yourself Lizzie Velasquez at TEDxAustinWomen"
YouTube YouTube is an American social media and online video sharing platform owned by Google. YouTube was founded on February 14, 2005, by Steve Chen, Chad Hurley, and Jawed Karim who were three former employees of PayPal. Headquartered in ...
. * 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 journalism, tabloid newspaper. Founded in 1903, it is part of Mirror Group Newspapers (MGN), which is owned by parent company Reach plc. From 1985 to 1987, and from 1997 to 2002, the tit ...
''. * 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 American women human rights activists American writers with disabilities American motivational speakers American 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 American women autobiographers American women bloggers American women non-fiction writers 21st-century American non-fiction writers Catholics from Texas American blind people Blind activists American activists with disabilities YouTubers from Austin, Texas