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What is Ehlers-Danlos syndrome? Lena Dunham reveals diagnosis

The actress has also previously been open about her struggle with endometriosis and eating disorders.
/ Source: TODAY

Lena Dunham wants fans to know there’s a reason why she sometimes has to rely on a cane: The “Girls” star says she’s living with Ehlers-Danlos syndrome, a rare condition that can cause joint pain and other problems.

Dunham took to Instagram over the weekend to share a photo of her using the walking aid while wearing a nightgown outdoors. The actress wrote that she could have chosen to be embarrassed by the “paparazzi pics” or pretended she was sporting an early Halloween costume, but neither was true.

Lena Dunham has Ehlers-Danlos syndrome.
Lena Dunham refused to be embarrassed by this photo. Living with a chronic illness means "we live many lives in one day," she wrote on

“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,” Dunham, who has also been open about her struggle with endometriosis and eating disorders, explained in the caption.

“So thank you, sweet cane! 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.”

Dunham wore the nightgown because she just needed to walk a few feet to a car to go to a doctor’s appointment, she added. An hour later, she wore a different outfit for a meeting, describing the contrasts as “the two-fold life of a woman with chronic illness.”

Last month, singer Sia revealed she suffers from chronic pain due to the same syndrome.

What is Ehlers-Danlos syndrome?

It’s actually a group of 13 related disorders caused by different genetic defects in collagen, an essential building block, according to the National Organization for Rare Disorders.

EDS weakens the body’s connective tissues — which normally provide strength and flexibility — either because the collagen isn’t as strong as it should be or there’s not enough of it in the skin, muscles, skeleton and blood vessels.

The inherited disorders affect about one in 5,000 people, the National Institutes of Health noted. They're diagnosed with genetic testing and a physical exam.

What are the symptoms?

They depend on the type of EDS and can range from loose joints to life-threatening complications, such as bleeding and the possibility of organ and vessel rupture. The Ehlers-Danlos Society listed these possible warning signs:

  • loose, overly flexible or unstable joints
  • joint pain
  • soft, stretchy, fragile skin that tears or bruises easily
  • slow and poor wound healing
  • severe scarring
  • debilitating musculoskeletal pain
  • poor muscle tone

What is the treatment?

There is no cure, so the treatment involves managing symptoms. About 90% of EDS patients suffer from chronic pain, which may require medication, physical therapy to prevent injuries, low-resistance exercise and the support of devices like braces, canes, wheelchairs and scooters.

If patients have loose, hypermobile joints that can easily dislocate, the focus is avoiding situations that might cause it to happen, like contact sports or lifting heavy objects. Calcium and vitamin D can help maximize bone density.

Doctors may also recommend patients use sunscreen and mild soaps to protect their fragile skin, the Cleveland Clinic noted.