What Is Ehlers-Danlos Syndrome? Jameela Jamil Spoke Up About How Living With It Affects Her

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Actor and body positivity advocate Jameela Jamil has been speaking out against the impossible beauty standards imposed on female-identified people for a while now, especially when its related to the entertainment industry. Recently, The Good Place star took to social media and opened up about her experience with eczema and Ehlers-Danlos syndrome, and why she wouldn’t use body makeup to cover up the symptoms of her condition.

In an Instagram post shared June 25, Jamil said that due to her medical conditions, she has a lot of scarring and pigment loss. “I have such severe eczema all over that my legs are covered in huge patches of pigment loss from scratching," she wrote the screenshot of the tweet she posted. "I have a tonne [sic] of stretch marks, and because I have Ehlers Danlos Syndrome, *every* time I cut, I scar. I *refuse* to have these normal human marks weaponised [sic] against me," she tweeted.

Jamil often gets candid about the ways she thinks certain products, like detox teas, can be damaging to women. And she said the same about body makeup, like the kind included in Kim Kardashian's new KKW Beauty Body Collection, a line of products that includes body makeup.

"[Body makeup] is a nightmare for your clothes, furniture, bedsheets, bank account, especially if you are tall or curvy, as you need so much extra, it’s time consuming to put on and take off," Jamil wrote. "It clogs pores, can make some skin conditions worse and is based on a Photoshop ideal of a woman."

Jamil didn’t call out a specific person or company in her post about living with Ehlers-Danlos syndrome. But the day before her post, she tweeted “hard pass” at a promotional video for the launch of Kardashian's beauty line. In the same tweet, Jamil said she that instead of using body makeup, she preferred to “make peace” with her stretch marks and eczema symptoms. So it's more than possible that the upcoming release of Kim's body foundation was still on Jamil's mind, especially in light of past accusations that the Keeping Up With the Kardashians star was purposefully darkening her skin to appear Black.

According to the National Center for Biotechnology Information, Eczema is a skin condition that affects about 15% of children and 2-4% of adults in the U.S. For adults, eczema symptoms are often more severe. Ehlers-Danlos syndrome, according to Genetics Home Reference, a branch of the National Library of Medicine, affects at least 1 in 5,000 individuals globally. It’s a disorder (with many different types) that impacts the connective tissues which support the skin, bones, blood vessels, and other organs.

Depending on the type and severity of Ehlers-Danlos, Genetics Home Reference says symptoms can range from mild joint pain to "life-threatening complications." And like Jamil, many people with this syndrome experience skin scarring.

Ehlers-Danlos affects the genes responsible for producing collagen, a protein found in the skin and bones that provides strength and elasticity to the skin. Affected individuals may also have soft, hyper-elastic, and fragile skin that tends to bruise easily, according to the National Institutes of Health. Another symptom is hyper-mobility — having a wide range of joint movements — which can cause joint dislocation and chronic pain.

These conditions — eczema and Ehlers-Danlos — can be physically painful, but they can also negatively impact mental health. A survey conducted by the National Eczema Association found that more than 30% of adults with atopic dermatitis (a type of eczema) report being diagnosed with depression and/or anxiety. In comparison, 7.1% of the general U.S. population has depression, according to the National Institute Of Mental Health.

Because living with these kinds of skin conditions can be exhausting and isolating, using body makeup to conceal some of the symptoms might make people feel more confident. But as Jamil points out, body makeup isn’t a long-term solution, and some products might make skin conditions worse. It's also worth noting that Kardashian wrote on Instagram that body makeup helps her to feel more confident about her psoriasis symptoms. "I’ve learned to live with and not be insecure of my psoriasis, but for days when I want to just cover it up I use this Body Makeup," she said.

Makeup can be empowering for those with skin conditions, but for others, a core part of body positivity is being able to toss the concealers to the side and show up as their authentic selves — scars and all.