Lena Dunham Speaks Out About Hypermobile Ehlers-Danlos Syndrome

The creator of "Girls", Lena Dunham, is speaking out about her experience with Hypermobile Ehlers-Danlos syndrome to bring awareness to the condition during EDS Awareness Month.

Lena Dunham has long shared her experiences with chronic illness with her social media followers — particularly her struggles with endometriosis — but this month, she’s opening up about living with Hypermobile Ehlers-Danlos syndrome.

The actor, director, producer, and writer posted about the condition on Instagram earlier this month, explaining that she wasn’t aware that she had the condition for many years, but receiving the diagnosis explained her symptoms.

“Until I was in my late twenties, I didn’t know that all my bendy party tricks (or the random fits of flushing which made red lipstick a gamble, or my migraines or swollen knees or fainting spells…) weren’t just quirks,” Dunham wrote. “They were all part of Hypermobile Ehler Danlos Syndrome, a genetic condition that means a lack of collagen in my connective tissue.”

Hypermobile Ehlers-Danlos syndrome, also known as hEDS, is an inherited connective tissue disorder, according to the National Institutes of Health (NIH). It is usually considered the least severe form of Ehlers-Danlos syndrome (EDS) — a group of genetic disorders that impact the skin, joints, and blood vessels.

In her post, the artist said the condition causes everything from joint pain and dislocation to poor wound healing, as well as “a plethora of seemingly random symptoms that aren’t so random at all.”

Dunham used her platform to offer supportive words to those struggling with EDS, reminding them that it’s not in their head, they’re not lazy, it’s alright to ask for help, and they’re allowed to make use of disability services.

“It may feel like the world is passing you by, but think of the gifts you develop as a result,” she added. “My creativity was born of the time I spent on my own. As a director, I work from a place of empathy that my illness gave me.”

Dunham also reminded those who love someone with EDS to be flexible, to not take it personally if that person needs to bail on plans, that it’s ok to be overwhelmed, and to remember that the person with EDS has “a well of hard-earned empathy just waiting for you.”

What is hEDS?

The condition is one of 13 known forms of EDS, all of which affect the tissue that supports and protects other tissues and organs in the body. Specifically, hEDS is caused by a lack of collagen — the body’s most abundant protein that protects tissues and organs while also helping new cells grow, replacing dead skin cells, and helping blood clot.

Common symptoms of the condition include:

  • Joint hypermobility that affects both large joints (elbows, knees) and small joints (fingers, toes)
  • Soft, smooth skin that may be slightly stretchy and bruises easily
  • Chronic musculoskeletal (muscle and bone) pain.

These symptoms may start to appear at any stage of life.

It is regarded as a genetic condition, but its cause is unknown as researchers have yet to identify the specific gene(s) responsible for hEDS.

And while the NIH estimates that fewer than 200,000 people in the United States have this disease, hEDS remains misunderstood and underdiagnosed, Dunham said.

“If you meet someone dealing with unexplained challenges and pain who fits this description, encourage them to learn about their symptoms,” Dunham wrote on social media. “Fact: it was actually someone who had read my writing about chronic pain & seen me on TV who encouraged me to see a specialist. That sisterly act of care changed my life.”

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