What Is Ehlers-Danlos Syndrome, the Genetic Disorder Singer Sia Is Suffering From?

Sia, the songwriter and performer known for such hits as "Cheap Thrills" and "Titanium," is almost as famous for her reclusiveness as for her music. Following the release of her breakthrough album 1000 Forms of Fear in 2013, the Australian singer performed without showing her face, sometimes facing the back of the stage or wearing oversized wigs with bangs that covered her nose.

But on Friday the 43-year-old singer, whose real name is Sia Furler, shared an intimate detail about herself, revealing to fans on Twitter that she suffers from chronic pain related to Ehlers-Danlos syndrome, which she called "a neurological disease." She offered a message of support to everyone else experiencing pain.

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

The Mayo Clinic describes Ehlers-Danlos syndrome as "a group of inherited disorders that affect your connective tissues—primarily your skin, joints and blood vessel walls." EDS symptoms vary, but those with the inherited condition often have extremely flexible joints and stretchy, fragile skin.

The Ehlers-Danlos Society lists 13 types of the disease, including arthrochalasia EDS, which involves hips displacement; brittle cornea syndrome, which affects the eyes; and hypermobile EDS.

While doctors did not use to associate Ehlers-Danlos with neurological symptoms, researchers are starting to understand the condition's neurological impacts. In a 2014 paper published by the National Institutes of Health and the Iranian Journal of Neurology, researchers wrote that: "Although the nervous system is not considered a primary target of the underlying molecular defect, recently, increasing attention has been posed on neurological manifestations of EDSs, such as musculoskeletal pain, fatigue, headache, muscle weakness and paresthesias."

Sia speaks onstage duing The Daily Front Row Fashion LA Awards 2019 on March 17, 2019 in Los Angeles, California. The famously private singer told fans she suffers from Ehlers Danos syndrome in a tweet Friday. Neilson Barnard/Getty

A particularly dangerous form of Ehlers-Danlos syndrome, called Ehlers-Danlos syndrome, vascular type, can include weakness of the aorta (the main artery connected to the heart), the intestines or the uterus. People with Ehlers-Danlos syndrome, vascular type are at risk of these organs rupturing, which can be fatal.

Not everyone who has Ehlers-Danlos syndrome is at increased risk of death, however, and some have even capitalized on the flexibility the condition can cause. EDS is sometimes referred to as "Cirque du Soleil disease," because a large number of contortionists and acrobats like those employed by the Canadian performance troupe exhibit the hypermobile type of Ehlers-Danlos syndrome.

The "Elastic Heart" singer is not alone in her diagnosis. Besides a large number of gymnasts, celebrities including The Good Place actor Jameela Jamil and Girls creator Lena Dunham have also shared their experiences and struggles with EDS symptoms. Worldwide, the syndrome is believed to effect one in every 5,000 people.