There are certain common health conditions you’re probably at least somewhat familiar with, like diabetes and asthma. And then there are ones you’ve likely never heard of before, like Ehlers-Danlos syndrome.
This condition has made several headlines recently—both Halsey and Sports Illustrated model Gigi Robinson revealed in the past week that they have Ehlers-Danlos syndrome. “You can feel like s–t and be super sick, not look it, and still be super sexy,” Robinson told the New York Post. “Both can, and do, exist.”
Halsey, 27, shared an update on Instagram and celebrated finally having an explanation after claiming doctors brushed off their symptoms.
"I just want to clarify, for the benefit of friends of friends who may have any of the diagnoses that I recently shared, I didn't 'just get sick' I've been sick. For a long time. My sicknesses just have their names now," Halsey wrote on an Instagram Story. "I went to doctors for 8 years. Trying to figure out what was wrong with me. I was called crazy and anxious and lazy amongst other things. I changed my entire lifestyle."
"When I wasn't working I was essentially confined to my home for fear of how I'd feel when I woke up each morning. It took me a long time to get to even having a diagnosis so I'm celebrating!" they continued. "Don't roll your eyes at your sick friends. They could be fighting a battle that they haven't named yet. Ya know?"
It’s understandable to have questions about Ehlers-Danlos syndrome. Here’s what you need to know.
What is Ehlers-Danlos?
Ehlers-Danlos syndrome is a group of disorders that impact the connective tissues supporting the skin, bones, blood vessels, and many other organs and tissues, per Medline Plus. Issues with those connective tissues cause a range of symptoms, the Mayo Clinic says, including:
Overly flexible joints that can lead to joint pain or dislocated bones
Fragile skin that doesn’t heal well
Ehlers-Danlos syndrome can also weaken your heart's largest artery and other arteries in the body and, if they rupture, it can be fatal, the Mayo Clinic says.
Ehlers-Danlos syndrome is caused by certain genetic mutations that can be passed through families, Medline Plus says.
What is its impact on someone’s day-to-day life?
People with Ehlers-Danlos syndrome may need to be more cautious with their physical activity because they struggle with overly flexible joints, the risk of joint dislocations, and early-onset arthritis. The fragile skin that can come from having Ehlers-Danlos syndrome can lead to scarring as well.
How many people have this?
At least one in 5,000 people worldwide have Ehlers-Danlos syndrome, Medline Plus says. Several celebrities have spoken out about having the condition, including Jameela Jamil and Lena Dunham.
What is the treatment like?
There is no cure for Ehlers-Danlos syndrome but patients can be treated with over-the-counter pain relievers and blood pressure medication, the Mayo Clinic says. Physical therapy, to strengthen muscles and stabilize joints may also help.
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