Ehlers-Danlos syndromeSia Tweets About Ehlers-Danlos Syndrome Diagnosis

Sia Tweets About Ehlers-Danlos Syndrome Diagnosis

Famous singer and songwriter, Sia, speaks out about her life with chronic pain, neurological disorders, and Ehlers-Danlos Syndrome (EDS), and the spoonie community offered support and love.

EDS is an umbrella term for a collection of connective tissue disorders that are commonly caused by genetics. While they vary in both symptoms and causes, EDS is known to cause joint hypermobility (joints that pop out of place too easily), skin hyperextensibility (skin that is too lose), and tissue fragility (skin that tears easily). Living with EDS has its complications, and you can read about real-life struggles it causes right here.

Sia is known for her hit songs and eccentric outfits, like the two-tone wig that covers her face. She has made it a point to stay out of the spotlight. In an interview with Chris Connelly on “Nightline” in 2014, Sia mentions that she doesn’t want to be “famous or recognizable.” Despite her goal of keeping her personal life out of the spotlight, Sia stepped forward to discuss her struggles with chronic pain and illness publicly via twitter, and the spoonie community is here for it.

EDS is a rather rare disease. According to the NIH, the combined prevalence of all types of Ehlers-Danlos syndrome appears to be at least 1 in 5,000 individuals worldwide. Because of the rarity, the EDS community has adopted a Zebra mascot to symbolize the community, due to the phrase taught to medical students, “When you hear the sound of hooves, think horses, not zebras.”

In medicine, the term “zebra” refers to rare conditions. Doctors train to find the easiest, most straightforward cause of a problem. Doctors use this tactic to avoid misdiagnosing patients and needlessly treating them for rare illnesses. Although the medical community may be right to use this tactic in most cases, it can also make getting a diagnosis harder for those who are actually suffering from a rare disease.

While the reaction has been positive on the whole, Sia’s following had mixed feelings about her original tweet. She mistakenly implied that EDS is a neurological disorder, which is a common misconception. Sia later sent out a tweet correcting her original statement and acknowledging that EDS is not a neurological disorder.

In addition, Sia addressing the limited healthcare resources available to others are struggling with chronic pain.

Sia may want to stay out of the public eye when it comes to her personal life, but it looks like the medical zebra community is excited to have a new advocate on their side.

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