黑料导航

Ehlers-Danlos Syndrome Explained

Kim Campo| February 13, 2024

On January 29, actress Selma Blair shared a  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). 

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

鈥淲hile 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.鈥

According to the , 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.  

鈥淭his is nothing that鈥檚 like horrible, scary stuff or anything,鈥 Blair shared with followers. 鈥淚t鈥檚 just like one of those extra things that turns into a chronic [condition], and you have to watch because people think stretching鈥檚 so good for you, and I鈥檓 technically not allowed to stretch because [my body is] always stretching.鈥

As Riley explains, this 鈥渟tretching鈥 can be a hallmark of the disease.

鈥淒epending 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,鈥 she says. 鈥淥ther classical EDS symptoms include wounds that heal very slowly and leave large, wide scars, as well as organ or hernia prolapse.鈥 

Other celebrities who have shared their EDS diagnosis in recent years include pop musicians  and , as well as , the star and creator of HBO鈥檚 Girls.   

Treatment often involves  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 鈥,鈥 or randomly.  might even suggest that patients consider a genetic consult if they have hypermobile joints or recurring dislocations.

鈥淲hile we can鈥檛 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,鈥 Riley says. 鈥淚n addition, those who have already been diagnosed should undergo regular scans to monitor internal organs.鈥

The integrated team at 黑料导航鈥檚 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.

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