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Anti-Bullying Activist With Rare Genetic Condition Speaks Out After Photo Of Her Is Used To Mock Trans Women

Lizzie Velásquez
Mat Hayward/Getty Images

Lizzie Velásquez, a motivational speaker with the extremely rare congenital disease Marfanoid–progeroid–lipodystrophy syndrome, spoke out on Tuesday after her photo was used in a post on X to mock trans women, writing: "My image is not yours to weaponize."

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Marfanoid-progeroid-lipodystrophy syndrome (MPL)—also called Marfan lipodystrophy syndrome (MFLS)—is an extremely rare genetic condition. It presents as a prematurely aged look caused by missing fat tissue and partial fat loss in the body.

Fewer than 10 cases of MPL were known when the syndrome was formally recognized and named as a distinct genetic condition in 2016. Before this discovery, people with the disorder were frequently misdiagnosed with Neonatal Progeroid Syndrome (NPS) or atypical Marfan syndrome.


Public figures like Lizzie Velásquez have brought media attention to MPL, but even before receiving her updated diagnosis, Velásquez was talking about ableism and bullying in general. Velásquez is an American motivational speaker, author, and anti-bullying activist known for speaking out about the severe online harassment she and others receive for their appearance.

On Tuesday evening, Velásquez posted a screenshot from X on Facebook and Instagram with the caption:

"Yesterday, someone shared a video of me saying that I need to die. Today, a photo of me is being used to mock and demean an entire community—and it has now been seen over 1.6 million times."
"I’ve spent years speaking out against bullying, hate, and the dehumanization of others. I will not stay silent when my face is being used to do exactly that."
"My image is not yours to weaponize. My differences are not a punchline. And no human being’s identity should ever be used as an insult."
"You don’t have to understand someone to respect their humanity."
"We can do better. We have to do better."

Lizzie Velásquez/Facebook

Velásquez's response calling out bullying, ableism, and transphobia was also shared on the original poster's X account by multiple people.

reply to @minglthatdingl/X

Velásquez shared the video she referenced in a separate post, then after that she found out a random X account used her picture for their transphobic post.

The account that used Velásquez's photo, which uses a cat picture and generic account name, later claimed it was just "rage bait" before eventually deleting the post with Velásquez's photo.

@minglthatdingl/X

"Rage bait" is online content solely designed to make people angry so they comment and/or share the original post.

The ratio on the original post didn't go the poster's way, nor did it earn them any new followers unless they began with fewer than 15.

@minglthatdingl/X


reply to @minglthatdingl/X

Their explanation for using Velásquez's photo didn't fare much better on X.

reply to @minglthatdingl/X


reply to @minglthatdingl/X


reply to @minglthatdingl/X


reply to @minglthatdingl/X


reply to @minglthatdingl/X


reply to @minglthatdingl/X


reply to @minglthatdingl/X


reply to @minglthatdingl/X


reply to @minglthatdingl/X


reply to @minglthatdingl/X

Unfortunately this isn't the first time Velásquez has found her photo used to promote hatred and ignorance.

Let's hope it's the last.

We can do better. We have to do better.

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