10 Things You Need to Know About Ehlers-Danlos Syndrome

With rare diseases, there’s often a lot of information that’s unknown or mysterious to the general public, patients, and even doctors.

Ehlers-Danlos Syndrome (EDS) is a group of disorders that qualify as a “mystery” disease—rare, but still affecting hundreds of thousands of people around the globe.

glowing question mark
Ehlers-Danlos Syndrome is one of the many mystery diseases people–especially doctors–need to learn more about.
Source: https://farm1.staticflickr.com
  1. There are six different types of Ehlers-Danlos syndrome, including: classic; dermatosparaxisarthrochlasiakyphoscoliosis; hypermobility; and vascular. Researchers created these six categories in 1997 after narrowing down the list from more than ten.
  2. The classic and hypermobility types are most common, affecting 1 in 10,000 to 15,000 or 1 in 20,000 to 40,000, respectively. The vascular type is rarer, affecting 1 in 250,000 people.
  3. Ehlers-Danlos syndrome is also referred to as EDS or Ehlers-Danlos disease, and is a largely inherited disease.
  4. Ehlers-Danlos syndrome affects tissues that support blood vessels, bones, skin, and other organs. These tissues are also known as connective tissues.
  5. People with this syndrome should avoid sports that increase the chance of injury, such as weightlifting and contact sports. Ankles, knees, and hip injuries can be caused by activities like running, step aerobics, or climbing stairs, according to the Mayo Clinic.
  6. People with EDS have skin that feels velvety and soft to the touch. Their skin is very stretchy, fragile, and elastic.
  7. With the “classic type” of Ehlers-Danlos syndrome, skin can create what are (informally) called “cigarette paper” scars; over time, wounds split and widen causing these characteristics.
  8. When EDS patients are at the dentist, they may need to take short breaks to close the mouth. It’s safer to allow that time to rest. In addition, not chewing gum, ice, or hard foods will protect the jaw.
  9. The violin and piano are safer instruments for Ehlers-Danlos patients for more than one reason. These instruments are better for the increased hand flexibility, while reed wind or brass instruments are more likely to cause a collapsed lung.
  10. Double-jointed people have nothing on Elhers-Danlos. These patients have joints that can be moved far past a “normal” range. Those with EDS might even be able to touch the tip of their tongue to their nose.
You don't have to go to THIS extreme, but the piano and violin are safe instruments for music-minded people with Ehlers-Danlos Syndrome. Source: giphy.com
You don’t have to go to THIS extreme, but the piano and violin are safe instruments for music-minded people with Ehlers-Danlos Syndrome.
Source: giphy.com

Winnie Nash

Winnie Nash

Winnie Nash, born and bred in Charleston, South Carolina, likes to think she’s sweet as tea. Passionate for people, stories, and a little bit of glitter, she has an especially soft spot for patients and their journeys. A writer with true disdain for clichés, Winnie catches every detail of a story—intently listening—craving the next word. Some may call it nosiness, but to her, it’s just wholesome curiosity.

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