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Lena Dunham revealed on Instagram this weekend that she has been dealing with a flare-up of Ehlers-Danlos syndrome (EDS), a chronic illness that weakens connective tissues and affects the skin, joints and blood vessel walls. The Golden Globe-winning actress made her revelation alongside a paparazzi photo which captured her walking to a car in her nightgown and slippers with the aid of a cane.
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“I could choose to be embarrassed by these paparazzi pics – I mean, that’s probably the point of someone publishing them in the first place – but I’m really not," she said. "I could lie and say it was an early Halloween look (Don’t you get it? I’m going as a con woman leaving a Florida Keys jail after being acquitted of murdering her husband, and now she’s trying to get disability license plates.) But the truth is just: This is what life is like when I’m struggling most with chronic illness.
“An Ehler-Danlos syndrome flare means that I need support from more than just my friends… so thank you, sweet cane!” she wrote. “For years, I resisted doing anything that would make my physical situation easier, insisting that a cane would ‘make things weird.’ But it’s so much less weird to actually be able to participate than to stay in bed all day.”
EDS is estimated to affect about 1 in 5,000 people worldwide, according to the U.S. National Library of Medicine. It’s a group of inherited disorders that weaken connective tissues, which are proteins that support skin, bones, blood vessels and other organs. Symptoms vary from mild to life-threatening and can include loose joints, fragile, small blood vessels, abnormal scar formation and wound healing and soft, velvety skin that bruises easily, according to MedLinePlus.gov.
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There is no cure for EDS, with treatment typically involving the management of symptoms and can include physical therapy and medicines.
Dunham wrote that she was on her way to a doctor’s appointment when the photo was snapped and was wearing her nightgown because she “wanted to be fully cozy.”
“I mean, didn’t Bieber wear hotel slippers for life five years?” she wrote. “Yeah, so I can wear my glamour nighty for two hours. And then an hour later, I’m in a meeting look tackling the job I love. That’s the two-fold life of a woman with chronic illness; we still rock our dreams and goals and passions (and fashions) and we live many lives in one day. Tell me about your day!”
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It’s not the first time Dunham has used her platform to spread awareness for a medical cause. To mark endometriosis awareness month in March, she uploaded a photo to Instagram of her 12 scars on her abdomen and the corresponding dates of surgeries, which include a hysterectomy and surgery to remove her left ovary. She’s also been open about sobriety and managing her anxiety.