Ehlers-Danlos Syndrome Explained

On January 29, actress Selma Blair shared a health update with her Instagram followers. Blair, who has starred in films like Legally Blonde and Cruel Intentions, has been open and forthcoming about her multiple sclerosis journey since her 2018 diagnosis. But her Instagram video revealed that she also lives with another condition: Ehlers-Danlos syndrome (EDS). 

“EDS is a group of inherited disorders affecting the connective tissues supporting the skin, bones, blood vessels, and other organs,” says Bernadette Riley, D.O., director of the Ehlers-Danlos Syndrome/Hypermobility Treatment Center and professor at the College of Osteopathic Medicine (NYITCOM). 

“While healthy patients have connective tissue made of sturdy collagen, which allows tissue to be stretched to its limit and then safely returned to its normal position, EDS patients have connective tissue with insufficient or faulty collagen, resulting in fragile tissue. The condition can be life-threatening if blood vessels are affected.”

According to the Cleveland Clinic, the disease is typically classified into 13 subtypes, characterized by various symptoms such as hypermobility, skin elasticity, and others, with patients affected differently depending on their subtype. 

Blair, who seemed to maintain a positive attitude throughout the video, noted that she experiences chronic pain and stiffness as a result of the disease.  

“This is nothing that’s like horrible, scary stuff or anything,” Blair shared with followers. “It’s just like one of those extra things that turns into a chronic [condition], and you have to watch because people think stretching’s so good for you, and I’m technically not allowed to stretch because [my body is] always stretching.”

As Riley explains, this “stretching” can be a hallmark of the disease.

“Depending on the subtype, EDS symptoms can vary. But signs of classical EDS typically include joint hypermobility or unstable joints that dislocate easily, as well as skin that may be fragile, smooth and velvety, or bruise easily,” she says. “Other classical EDS symptoms include wounds that heal very slowly and leave large, wide scars, as well as organ or hernia prolapse.” 

Other celebrities who have shared their EDS diagnosis in recent years include pop musicians Halsey and Sia, as well as Lena Dunham, the star and creator of HBO’s Girls.   

Treatment often involves strengthening surrounding muscles to assist with some of the work normally done by the ligaments, which can be weakened by the disease. Other EDS treatments might include reducing stress to the aorta and other arteries, as well as managing skeletal and joint complications. 

Experts believe the disease is caused by specific mutations in genes that provide the conditions for making collagens and related connective tissue proteins. Biological parents can pass on these mutations to their children, but some types of EDS may happen “somatically,” or randomly. Some physicians might even suggest that patients consider a genetic consult if they have hypermobile joints or recurring dislocations.

“While we can’t control the genetic mutations that cause EDS, if there is a family history of EDS, individuals should speak to their healthcare provider about genetic counseling,” Riley says. “In addition, those who have already been diagnosed should undergo regular scans to monitor internal organs.”

The integrated team at New York Tech’s Ehlers-Danlos Syndrome/Hypermobility Treatment Center works together across specialties to offer a variety of services to help evaluate and design individualized treatment programs. Services offered include primary care, cardiology, occupational therapy, physical therapy, speech therapy, neuropsychology, and many other areas.