Jameela Jamil opens up on Ehlers-Danlos Syndrome diagnosis, impacts in TikTok video


Jameela Jamil has opened up about the reality of living with a rare tissue disorder, pleading with fans to get themselves checked.

In a TikTok video, the British actress told viewers about her experience of Ehlers-Danlos syndrome (EDS) and demonstrated some of the physical effects of the condition.

Jamil pulled her cheeks away from her face to show how stretchy the skin on her face is.

“That is not an app, that is not a filter, that is just my face. Look at how elastic is is,” she said.

Watch the video above.

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Jameela Jamil reveals impacts of Ehlers-Danlos syndrome.
Jameela Jamil has opened up about the reality of living with Ehlers-Danlos syndrome. (TikTok/Jameela Jamil)

“The reason it is so elastic is because I have something called EDS, Ehlers-Danlos Syndrome.”

The Good Place star explained how the syndrome impacts her life, and how lucky she was to be diagnosed early in life.

“It pertains to my joints,” she continued, hyperextending her arm.

“As you can see, nothing bends the right way, everything bends the right and the wrong way. If you’re a kid with it you shouldn’t be doing contact sports.

“I’m lucky that I was diagnosed with it at nine years old, so I was able to avoid a lot of the things that would’ve made me much sicker when I got older.”

Jameela Jamil sporting a lilac purple dress against a yellow backdrop. She's in a crouched position, patting a small brown dog who features in the picture too.
“I’m lucky that I was diagnosed with it at nine years old so I was able to avoid a lot of the things that would’ve made me much sicker when I got older.” (Instagram)

Jamil also noted the dangers of having EDS without being aware.

She said the disease impacts “every single part of your body” including “bruising, bleeding, healing” and even pregnancy, with people suffering from EDS requiring special attention during childbirth and C-sections.

Many TikTok users commented to thank the star for spreading awareness of the condition.

“Thank you for using your platform to do this I have EDS !!!!!!” one wrote.

“After 15 years of doctors dismissing me, I got my dx a couple years ago because of you talking about EDS online. you changed my life, thank you,” read another comment, which received a reply from Jamil.

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Jameela Jamil wearing red and black, smiling at camera
Jamil noted the dangers of having the disorder without being aware. (Instagram)

“Oh my god that’s amazing. I am sorry I haven’t spoken about it more. I got globally gaslit about my health and stopped talking about it. Well done you,” she wrote.

In 2020, a writer accused Jamil of having Munchausen syndrome, which sees an individual repeatedly and knowingly faking mental or physical illnesses for attention.

Jamil, whose health history includes cancer battles, car accident injuries, mercury poisoning, seizures, run-ins with “killer bees” and EDS, refuted these claims publicly at the time.

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The She Hulk star alluded to this incident as she posted her most recent TikTok video to Instagram.

“The internet made fun of me over my health problems, and it made me suicidal for a while,” Jamil captioned the video

“But they are just a bunch of ignorant arseholes who haven’t a hundredth of our strength, they can’t imagine surviving what we survive, so they choose to gaslight us about it all instead.”

Despite the negative stigma and critics she says she faced, the actress explains she’s not done speaking out about EDS.

“I’m done not talking to the people who MATTER about this hugely important subject because a bunch of people lucky to have good health, have no souls,” she wrote.

“Let’s raise awareness on this subject together, and save some motherf–king lives!”

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