Lizzie Velasquez stumbled upon a video of herself titled “the ugliest woman in the world” when she was 17 years old.
Spurred on by insults about her appearance, the motivational speaker and anti-bullying campaigner has dedicated her life to talking openly about her extremely rare genetic disorder.
The 28-year-old can’t gain weight, she has never weighed more than 29kg, despite consuming a whopping 6000 calories every day. She is blind in her right eye, which began to cloud over when she was four, and vision impaired in her left.
There’s a problem with the aortic valve in her heart, a risk that it “might dilate to the point of abruptly rupturing,” she reveals in her new book, Dare to be Kind (a memoir detailing her childhood and breakdown ).
Despite living with this potentially frightening unknown, Velasquez remains outrageously optimistic, driven by her faith, she’s constantly expressing gratitude, excitedly talking at a hundred-miles-an-hour. She lives alone with her small, white fluffy dog, Ollie.
“[My life] feels completely normal, but completely surreal at the exact same time,” Velasquez tells Stuff from her hometown of Austin, Texas.
“I’m just so happy [I’m] done with being a teenager in high school. It was very interesting. It was great. It was scary. The hardest part was definitely the online bullying.
“You’d assume I was being bullied a tonne at school and it was horrible, but in reality, I really was getting bullied everywhere else.
“Friends who were so supportive absolutely made my high school – that could have been traumatic – they definitely made it bearable.”
Dating is something Velasquez missed out on as a teenager, but she’s much happier looking for love now she’s older and aware of her self-worth. Currently single, Velasquez admits she has a love/hate relationship with dating apps.
“I don’t look like your average 28-year-old, [with] everything my condition brings to me. “I am a public figure and a lot of people know who I am. They know I’ve met celebrities… I’m very cautious as to what is the true agenda.
“I’ve also noticed there’s some guys who don’t have any idea who I am or my background. I kind of like that because it’s nice for them to be able to get to know me on a clean slate.
Velasquez’s busy schedule, travelling across the country for up to three weeks a month, makes it tricky to get a relationship off the ground.
“I’ll meet someone and we’re dating, but I know I’m only home for a certain amount of time. It’s really not fair for that person.”
In late 2014, at 25, Velasquez was officially diagnosed with Marfanoid–progeroid–lipodystrophy syndrome, just the second person in the world to own this tag. Before that, she considered herself the “undiagnosed girl,” spending her life being poked and prodded by various specialists trying to piece together her symptoms.
Despite the relief of finally having an explanation, Velasquez fell into a spiral of suicidal depression, becoming addicted to her anxiety medication.
“At times it definitely felt impossible… personally battling all this negativity and I was getting frustrated.
Although her recovery took over a year, friends, family, and fans got her through it, she says.
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#Day4 – I’m getting a little more personal… When Lizzie Velasquez (@LittleLizzieV) was 17 years old, someone posted a video of her on YouTube calling her the world’s ugliest woman. “By the time I saw the video, it had 4 million views.” Now 26 years old, Lizzie’s condition was diagnosed last summer. Lizzie suffers from a rare congenital disease that less than 10 people in the world are known to have. The disease impedes her from accumulating body fat; she literally has zero percent body fat and has never weighed more than 64 pounds, however though it is not terminal. Throughout her entire life, this condition has resulted in a lot of #bullying. It is so unacceptable to treat people like this. People are so quick to say horrible things about me everyday over and over and sometimes I can’t take it. Even I at times get affected by it, I breakdown, I hide, I cry. It’s resulted in a lot of anxiety for me that I’ve never had to deal with before ever. My every move has been documented for the whole world and its been a nightmare trying to find myself through all of this. And I’ve absolutely lost apart of myself. Lizzie, you are so strong and I admire you so so much. Lizzie has taken that negative energy and has turned it around by traveling around the world doing motivational speeches. When I asked her what the key messages were of her speeches, she told me that “Most importantly I try to convey that all you need to have is a brave heart to accomplish whatever you want to achieve. Let the negative build you up instead of knocking you down. You are enough no matter what; you were put on this earth for a reason” Soon you’ll be able to see her story on the big screen in the documentary film @ABraveHeartFilm in theaters on September 25th. Check out Lizzie’s Instagram @LittleLizzieV – she’s taking a lifetime full of bullying to help teach the world #IAmMoreThan the names they call me. #ImWithLizzie and Lizzie taught me #IAmMoreThan who I think I am. For me, this is expected it comes with the territory. But Lizzie, you should of not had to go through that. Let’s change this together. I love you Lizzie! I’ll see you soon.
In addition to being a motivational speaker, Velasquez campaigns for awareness of online bullying, taking part in Kylie Jenner’s #IAmMoreThan project and supporting anti-bullying legislation across the United States.
“I honestly feel the happiest I’ve felt in a very, very long time. I think I feel happy and content with where I am right now.
“I finally feel like everything is starting to fall into place not just with my career but my everyday personal life.”