Jameela Jamil discusses experience with Ehlers-Danlos syndrome on TikTok
Jameela Jamil has gone into detail on TikTok about her experience with hypermobile Ehlers-Danlos syndrome, which affects her joints and causes her to have ‘elastic’ skin.
The star of She-Hulk: Attorney At Law and The Good Place said that she was diagnosed with the genetic condition aged nine and was praised for using her platform, as she often does, to raise awareness and encouraged others to see their doctor if they suspect they might have it.
She showed viewers how much she could stretch the skin on her face. “Look at how elastic that is. The reason it’s so elastic is because I have something called Ehlers Danlos Syndrome (EDS). I have hEDS three – and the ‘H’ is because I’m so hypermobile.”
When it comes to her joints, she said that “nothing bends the right way”.
Jamil acknowledged that although people like to “make fun of [her] over her health,” she wanted to speak about it because of how “serious” it is and how it impacts “every single part of your body and even impacts your mind”.
Jamil also shared the video to Instagram with the accompanying caption: “NB geneticists are also good for diagnosing EDS. I saw a rheumatologist because I have hEDS which affects my joints. Good luck finding a diagnosis. Hold strong. Love you.
“Ps. Sorry I don’t talk about this more often. The internet made fun of me over my health problems and it made me suicidal for a while. 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.
“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. Let’s raise awareness on this subject together, and save some motherfucking lives!”
Per Healthline, Hypermobile EDS is one of the most common types of Ehlers-Danlos syndrome – there are 13 types in total. It affects about one in 5,000 people and impacts upon the connective tissues that support and structure the skin, joints, bones, blood vessels, and organs. Each case of EDS is different, and there is no singular cure.
Earlier this year, Jamil quit Twitter after Elon Musk became CEO.
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Emma Wilkes
NME