Elhers-Danlos syndrome: what is this chronic disease suffered by Sia and Lena Dunham?

Paparazzi have pushed actress and director Lena Dunham to assume the disease she has. Photographed with a cane, she shared the snapshot on Instagram with a long explanatory text. At the beginning of October, singer Sia has revealed that she suffers from the same thing: Ehlers-Danlos syndrome, also known as chewing gum disease.

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. Life is fucking hard. Pain is demoralizing, and you’re not alone.

— sia (@sia) October 4, 2019

See this post on Instagram

I could choose to be embarrassed by these paparazzi pics- I mean, that’s probably the point of someone publishing them in the first place- but I’m really not. I could lie and say it was an early Halloween look (Don’t you get it? I’m going as a con woman leaving a Florida Keys jail after being acquitted of murdering her husband, and now she’s trying to get disability license plates. ) But the truth is just: 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. I was walking four feet to the car to go to the doctor and I wanted to be full cozy. I mean, didn’t Bieber wear hotel slippers for like five years? Yeah, so I can wear my glamorous nighty for two hours. And then an hour later, I’m in a meeting look tackling the job I love. 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. Tell me about your day!

A post shared by Lena Dunham (@lenadunham) the Nov 1, 2019 at 11:00 a.m. PDT

A term that designates several pathologies

Elhers-Danlos syndrome is of genetic origin and brings together 13 similar pathologies. All are characterized by abnormalities of the supporting tissues. “We can consider the connective tissue as a fundamental substance in which bathes all the organs, specifies the SED’in France website, it is a filling and supporting element, but also a messenger of nervous activities.” In most cases, the main symptoms are cutaneous hyperextensibility, the presence of numerous scars, the fragility of the tissues and the hyperlaxity of the joints. Some complications can be very serious because the disease can cause the rupture of blood vessels or even certain organs.

A disease of genetic origin

These diseases are linked to disorders in the production of collagen, the protein that allows tissues to be elastic and resistant. Affected individuals possess specific genetic variations that cause the disorder to appear. The scientific community has identified 19 main genes present in patients.
Today, no medicine can cure the syndrome, the only existing treatments can relieve the symptoms such as non-steroidal anti-inflammatory drugs.

About 1 in 5,000 people worldwide have the disease. According to a document from the Elhers-Danlos Syndrome Study and Research Groupit could affect a million people in France.