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What is Ehlers-Danlos syndrome? Halsey reveals diagnosis

The singer was also diagnosed with several other syndromes after experiencing worsening health problems.
2022 Vanity Fair Oscar Party Hosted By Radhika Jones - Arrivals
Halsey attends the 2022 Vanity Fair Oscar Party in Beverly Hills, California, on March 27. (Photo by Daniele Venturelli/WireImage).Daniele Venturelli / WireImage
/ Source: TODAY

After a public struggle with endometriosis, Halsey is opening up about several other life-disrupting health issues.

The Grammy-nominated singer, who uses the pronouns she/they, revealed they've finally received some answers after being sick for most their adult life and finding their symptoms starting to get "really bad," they said in their Instagram story Tuesday.

“Obviously my health has changed a lot since I got pregnant and gave birth. And I started getting really, really, really sick,” Halsey, 27, said in the video.

“I was hospitalized for anaphylaxis a few times and I had some other stuff going on. Basically, after seeing like 100,000 doctors, I got diagnosed with Ehlers-Danlos syndrome, Sjögren’s syndrome, mast cell activation syndrome, POTS."

The singer said they were on a treatment plan and staying active.

People identified the last condition as postural orthostatic tachycardia syndrome, a group of disorders marked by lightheadedness or fainting and a rapid heart rate when a person stands up after lying down, according to the National Institute of Neurological Disorders and Stroke. Up to 80% of patients are women between the ages of 15 to 50.

Sjögren’s syndrome is an autoimmune, rheumatic disease with symptoms that include dry mouth, dry eyes, fatigue and musculoskeletal pain, according to the American College of Rheumatology. Most patients are women.

In mast cell activation syndrome, a patient keeps experiencing hives, swelling, low blood pressure, difficulty breathing and other symptoms of anaphylaxis, the American Academy of Allergy, Asthma & Immunology noted.

TODAY first explored the causes, symptoms and treatment of Ehlers-Danlos syndrome in 2019 when actress Lena Dunham revealed her diagnosis:

What is Ehlers-Danlos syndrome?

It’s actually a group of 13 related disorders caused by different genetic defects in collagen, an essential building block, according to the National Organization for Rare Disorders.

EDS weakens the body’s connective tissues — which normally provide strength and flexibility — either because the collagen isn’t as strong as it should be or there’s not enough of it in the skin, muscles, skeleton and blood vessels.

The inherited disorders affect about one in 5,000 people, the National Institutes of Health noted. They’re diagnosed with genetic testing and a physical exam.

What are the symptoms of Ehlers-Danlos syndrome?

They depend on the type of EDS and can range from loose joints to life-threatening complications, such as bleeding and the possibility of organ and vessel rupture. The Ehlers-Danlos Society listed these possible warning signs:

  • loose, overly flexible or unstable joints
  • joint pain
  • soft, stretchy, fragile skin that tears or bruises easily
  • slow and poor wound healing
  • severe scarring
  • debilitating musculoskeletal pain
  • poor muscle tone

What is the treatment for Ehlers-Danlos syndrome?

There is no cure, so the treatment involves managing symptoms. About 90% of EDS patients suffer from chronic pain, which may require medication, physical therapy to prevent injuries, low-resistance exercise and the support of devices like braces, canes, wheelchairs and scooters.

If patients have loose, hypermobile joints that can easily dislocate, the focus is avoiding situations that might cause it to happen, like contact sports or lifting heavy objects. Calcium and vitamin D can help maximize bone density.

Doctors may also recommend patients use sunscreen and mild soaps to protect their fragile skin, the Cleveland Clinic noted.