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Selma Blair on Living With Ehler-Danlos Syndrome: ‘I Hurt All the Time’

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Selma Blair recently shared an update on her health—and revealed a diagnosis she hasn’t talked about before. In an Instagram video, the actor lounged in bed and detailed her experience with Ehler-Danlos syndrome, a condition that impacts crucial connective tissues throughout the body.

“I hurt all the time,” Blair said while receiving intravenous immunoglobulin (or IVIG, an antibody therapy that’s often used to treat immunodeficiencies and autoimmune conditions). “I say that only for you people that hurt also. Like, I get it. And for all of us…just aging, it hurts. You have to stretch. But for me, it’s hard to stretch because the Ehler-Danlos…your muscles just aren’t as stable.”

Blair, who is in remission from multiple sclerosis, said she’s due for more testing soon. But, “I seem to be doing fine and this helps so much,” she added, referencing the IVIG.

The comments on Blair’s post were flooded with well wishes, as well as messages from people who also live with Ehler-Danlos syndrome. Blair noted in her video that the condition is “something so many more people have now than I realized”—some estimates show that the condition might affect up to one in 5,000 people.

Ehler-Danlos syndrome is a group of genetic disorders that affect the body’s ability to form and use collagen and other proteins that serve as the building blocks for skin, bones, muscles, tendons, ligaments, and more. This can trigger a vast range of symptoms, from slightly loose joints to life-threatening complications, per the US National Library of Medicine. Most people with Ehlers-Danlos syndrome have an unusually large range of motion in their joints (known as hypermobility), along with skin that’s particularly stretchy and fragile. Easy bruising and scarring are hallmarks of the condition too.

Unfortunately this means living with Ehlers-Danlos syndrome can lead to a higher risk of developing chronic pain and injuries. “Connective tissue is what holds our bodies together and, with Ehlers-Danlos syndrome, the joints are looser than expected,” Staci Kallish, DO, an associate professor of genetics and translational medicine at Penn Medicine in Philadelphia, tells SELF. “That can make the joints unstable, move in and out of place, and even cause true dislocation, all of which can lead to pain and fatigue.” These factors can also raise a person’s risk of developing arthritis at a younger age, she says.

Blair touched on her experience with this in the video: “The Ehler-Danlos will make me really, really, really stiff ’cause I’ll pull my muscles too easily and then they’re slack and sit there. So I get some injuries.”

There’s no cure for Ehler-Danlos, but there are lots of medications that can help keep symptoms in check. Because joints with weak connective tissue are more likely to dislocate, experts tend to recommend exercises that can help stabilize and strengthen vulnerable areas. “Physical therapy is the mainstay of treatment for joint symptoms in all forms of Ehlers-Danlos syndrome,” Dr. Kallish says, adding that this often “looks like a full-body strengthening program.”

Lowering the risk of potential injuries is also really important, Dr. Kallish says. People with Ehlers-Danlos syndrome are generally advised to avoid contact sports, intense weight lifting, and other exercises that can overly stress the hips, knees, and ankles. They may be told to avoid chewing gum to protect the jaw joint, wear supportive shoes to prevent ankle sprains, and use body pillows and dense foam mattresses to cushion the joints during sleep, Dr. Kallish says.

Despite the ongoing pain and fatigue, Blair said she’s generally doing well. But she doesn’t know if she’ll ever have “the coordination or balance or stamina that I want to.” It’s a “bummer,” she added, “but I’m still lucky, still grateful, still okay.”

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Originally Appeared on SELF