(Note from Erin: I was diagnosed with EDS a little over a year ago. I was adopted, and did not realize or know I had it until I spoke to my birth father’s side of the family about it. XO)
Sia, the reclusive songwriter and performer, just revealed something very personal about herself. She shared that she suffers from chronic pain due to a neurological disease called Ehlers Danlos syndrome.
The 43-year-old Australian singer, who often performed facing the back of the stage and without showing her face, shared the intimate detail about herself on Friday. She gave a message of support to everyone else enduring pain, tweeting:
“I just wanted to say to those of you suffering from pain, whether physical or emotional, I love you, keep going. Pain is demoralizing, and you’re not alone.”1
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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.1
EDS symptoms vary, but those with the inherited condition often have extremely flexible joints and stretchy, fragile skin. They also often bruise and scar easily.
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According to the Ehlers-Danlos Society, there are 13 types of the disease, including arthrochalasia EDS, which involves hips displacement; brittle cornea syndrome, which affects the eyes; and hypermobile EDS. Most forms of the condition affect at least 1 in 5,000 people worldwide.
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Until recently, doctors did not associate Ehlers-Danlos with neurological symptoms, but 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.”1
We send her lots of love and wish her well.
