Lena Dunham speaks out about Hypermobile Ehlers-Danlos syndrome… as she brings awareness to the genetic condition

Lena Dunham spoke about her genetic condition, Hypermobile Ehlers-Danlos Syndrome, in an Instagram post on Thursday morning.

The 37-year-old star, who revealed she was diagnosed with hEDS in 2019, wanted to shed light on the condition during the month of May as it is Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders Awareness month.

Lena shared two selfies showing her red skin, which is one of her symptoms, as well as swelling in her hands and her hyper-flexibility with her knuckles and feet.

She also shared a short clip of her using an elevator to take her upstairs, as well as a close-up of her tattoo that reads “sick.”

Hypermobile Ehlers-Danos syndrome is one type of EDS, caused by defects in a person’s collagen.

Common symptoms of the condition include muscle and bone pain, hypermobility, easy bruising, skin that is somewhat elastic, according to the Information Center for Genetic and Rare Diseases.

The 37-year-old star, who revealed she was diagnosed with EDS in 2019, wanted to shed light on the condition during the month of May as it is Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders month.

The star wrote a lengthy caption: ‘Until I was in my late 20s, I didn’t know that all my bendy party tricks (or the random blushes that made red lipstick a gamble, or my migraines or swollen knees or fainting…) weren’t just oddities.’

She continued, “They were all part of hypermobile Ehler Danlos syndrome, a genetic condition that means a lack of collagen in my connective tissue. This causes everything from joint pain and dislocation, poor wound healing and a plethora of seemingly random symptoms that aren’t so random at all.’

‘Hypermobile EDS is one of 13 known forms of EDS – and although this condition is misunderstood and underdiagnosed, it is thought to affect 1 in 5,000 to 1 in 40,000 people, depending on the type.

Born on May 13, Lena said it’s “fitting that I was born in May because it is also EDS Awareness Month.” If you or someone you love lives at EDS, now is the time to make some noise about it.”

The Girls creator continued, writing, “And if you meet someone dealing with unexplained challenges and pain who fits this description, please encourage them to learn more about their symptoms. Fact: It was actually someone who had read my writing about chronic pain and seen me on TV who encouraged me to see a specialist. That sisterly act of care changed my life.

“If you have EDS, remember: 1-It’s not in your head. 2-You are not lazy. 3 – it’s okay to ask for help – there’s no shame in admitting what you can’t do. 5 [sic] You may use disability care. The only time I’m rude outside is when someone asks why I use the disabled toilet. 6-You may feel like the world is passing you by, but think of the gifts you are developing as a result. My creativity came from the time I spent alone. As a director I work from the empathy that my illness has given me.’

One of the symptoms she experiences is a random flushing, as seen on her cheeks

Lena showed off her swollen and bruised finger, a symptom of the condition

She also shared some of her flexibility – another symptom of it

The star also shared a close-up of her tattoo that read “sick”

Lena gave her followers words of wisdom if they know someone with EDS, writing that if they love someone with EDS they need to be “flexible,” adding, “They are doing their best. Don’t take it personally: tiredness, changed plans.

Additionally, it’s okay to be overwhelmed, and ultimately, to remember that there is a source of hard-earned empathy waiting for you.

Finally, Lena said she offers “love to anyone living with chronic pain or supporting a loved one who does,” listing ehlers-danlos.com as a place to find more information.

The star also said: ‘ps scroll to see the lift that takes me to set – I’d love to take you for a ride sometime,’ and added a heart.

The star also said: ‘ps scroll to see the lift that takes me to set – I’d love to take you for a ride sometime’, adding a heart

She references a short video she shared of herself in an open elevator on set.

Lena revealed she had the condition in 2019, via a statement on her Instagram page.

The star has also been open about her struggles with endometriosis, her decision to undergo a hysterectomy at the age of 31 due to her endometriosis and also mental health issues.