Actor Lena Dunham has opened up about living with a type of Ehlers-Danlos syndrome (EDS) on Instagram.
Alongside a paparazzi shot of Dunham walking with a cane while wearing slippers and a nightgown, she wrote: “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!
“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. And yes, you’d better believe I’m wearing my nightgown.”
She goes on to describe how, later the same day, she had a business meeting: “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.”
Dunham isn’t the only celebrity to open up about suffering from Ehlers-Danlos syndromes. In October singer Sia tweeted: “Hey, I’m suffering with chronic pain, a neurological disease, ehlers danlos and I just wanted to say to those of you suffering from pain, whether physical or emotional, I love you, keep going” – a tweet that now has 173.1k likes. Actor Jameela Jamil has also spoken about having EDS on social media.
Celebrities discussing this rare group of conditions has raised awareness – here’s what you need to know about EDS…
An EDS thread. EDS is having to lie with your legs above your head every evening because of the pain and swelling from being on your feet. What is your EDS experience? pic.twitter.com/GTbEM9EOpj— Jameela Jamil 🌈 (@jameelajamil) September 26, 2019
EDS is a collection of 13 syndromes, grouped together because they share many of the same traits. Dr Belinda Griffiths from The Fleet Street Clinic calls it: “A group of rare inherited conditions which can affect connective tissue, causing joint hypermobility, stretchy, fragile skin, blood vessel disorders, bone pain and internal organ damage.”
Griffiths says: “There are at least 19 different chromosomal gene types which can cause Ehlers-Danlos,” and the way it can be genetically inherited means “effects are impossible to predict.”
Symptoms are often varied and hard to pinpoint, but according to Griffiths, some of the more common symptoms include: “Tiredness, dizziness, joint pain, bruising, hernia, heartburn, constipation and delayed wound healing.”
Feeling incredibly grateful for people like @jameelajamil and @Sia openly talking about how hard it can be living with #EDS - I pray this leads to a day that I tell people “I have EDS” and they don’t say “what’s that”? 🙌🏻@TheEDSociety #feelinghopeful #EhlersDanlosSyndrome— Lara Bloom (@LaraBloom) October 7, 2019
“There is no specific test for the condition, so the diagnosis is made on the basis of symptoms, clinical history and physical examination,” explains Griffiths. She says: “There is no prediction of disease, other than family members will have increased susceptibility.”
Unfortunately, there’s no cure for EDS either. “There is no treatment as such; symptoms have to be managed as they arise,” says Griffiths.