Lena Dunham speaks out about Hypermobile Ehlers-Danlos syndrome... as she brings awareness to the genetic condition
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Lena Dunham spoke out about her genetic condition, Hypermobile Ehlers-Danlos syndrome, in an Instagram post shared on Thursday morning.
The 37-year-old star, who revealed she was diagnosed with hEDS in 2019, wanted to bring light to 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 flushed 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 up to set, as well as a close up of her tattoo that said '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, easily bruised, skin that is slightly elastic, according to the Genetic and Rare Diseases Information Center.
The star wrote a lengthy caption, writing: '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.'
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 & 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 while this condition is misunderstood and under-diagnosed, it's thought to affect 1 in 5000 to 1 in 40,000 people, depending on the type.
Lena, who was born May 13, said it is 'fitting that I was born in May because it's also EDS awareness month. If you or someone you love lives with EDS, this 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, encourage them to learn about their symptoms. 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.
'If you have EDS, remember: 1-it's not in your head. 2-you're not lazy. 3-it's alright to ask for help-there's no shame in admitting what you can't do. 5 [sic] You're allowed to take advantage of disability services. The only time I'm ever sassy outdoors is when someone asks why I'm using the disabled bathroom. 6-It may feel the world is passing you by, but think of the gifts you develop as a result. 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.'
Lena gave her followers words of wisdom if they know anyone with EDS, writing that if they love someone with it, to 'be flexible,' adding: 'They're doing their best. Don't take it personally - fatigue, changed plans.
As well as that it is 'ok to be overwhelmed,' and finally to 'remember they have a well of hard-earned empathy just waiting for you.'
Finally, Lena said that she is 'offering love to everyone living with chronic pain or supporting a loved one who does,' giving ehlers-danlos.com as a place to find more information.
The star also said 'ps scroll to see the elevator that takes me up to the set - would love to take you for a ride sometime,' adding a heart.
She is referring to a short video she shared of herself on an open elevator on set.
Lena revealed she had the condition back in 2019, via a statement posted to her Instagram page.
The star has been also candid about her struggles with endometriosis, her decision to have a hysterectomy at 31 due to her endometriosis and also mental health issues.
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