Lena Dunham recently revealed that she suffers from a rare condition known as Ehlers-Danlos syndrome.

Paparazzi recently captured Lena Dunham outside of her home wearing a nightgown and using a cane to walk. While that may seem like odd behavior for a celebrity, Dunham had a very good explanation. She suffers from Ehlers-Danlos syndrome — a group of disorders that affects the joints and skin.

Rather than being embarrassed by the photos, Dunham took to Instagram to explain her situation. In part, she said, “An Ehler-Danlos syndrome flare means that I need support from more than just my friends… so thank you, sweet cane!” Actress Jameela Jamil and singer Sia also tweeted that they suffer from the same condition.

Here’s everything you need to know about the oft-overlooked ailment, from causes to treatment (and everything in between):

What is Ehlers-Danlos syndrome?

Ehlers-Danlos syndrome (EDS) isn’t just one illness or disorder: According to the National Organization for Rare Disorders, it’s actually a group of 13 related conditions caused by different genetic defects in collagen. The inherited disorder affects about one in 5,000 people, making it relatively rare.

Photo Courtesy: [baedaya/Pixabay]

There are several different types of EDS, but they all weaken the body’s connective tissues. This makes your joints loose and weak and skin unusually stretchy — either because your collagen isn’t as strong as it’s supposed to be, or because there isn’t enough of it.

There are many types of EDS

Ehlers-Danlos is typically characterized by loose joints and skin that stretches more than it’s supposed to — however, there are several different variations to the condition. The most common form of EDS is called the hypermobility type. It causes joints to bend farther than they should (often referred to as “double-jointed”), and makes patients more likely to suffer from frequent dislocations and sprains.
Other types of EDS include the classical type (which causes joint problems and stretchy, fragile skin that can bruise easily), vascular type (weakens blood vessels), and arthrochalasia (babies are born with their hip joints out of place). In addition, just a dozen people worldwide have been diagnosed with the extremely rare dermatosparaxis type, which causes soft, doughy skin.

What are the symptoms?

Symptoms can vary depending on the type of EDS and diagnosis typically requires extensive testing. Unfortunately, the most common symptoms of Ehlers-Danlos can be mistaken for countless other conditions (such as Lyme disease and fibromyalgia) and patients are often misdiagnosed.

An Ehler-Danlos syndrome flare means that I need support from more than just my friends… so thank you, sweet cane!

If you have more than one symptom of EDS, consider bringing it up with your doctor. Some things to look out for include loose, overly flexible joints, joint pain, skin that bruises or tears easily, severe scarring, frequent rashes, poor body temperature regulation, and poor muscle tone.

What causes it?

Experts believe that Ehlers-Danlos is a hereditary condition, caused by gene mutations that are passed down from one generation to the next. When you go for diagnosis, they will likely ask you if your parents or siblings suffer from similar issues (for example, does anyone else in your immediate family bruise easily?).

According to the Ehlers-Danlos National Foundation, “Each type of EDS is a distinct disorder that ‘runs true’ in a family. This means that an individual with Vascular Type EDS will not normally have a child with Classical Type EDS.” There are rare cases, however, where a new gene mutation can occur in a person, even with no family history of the condition.

How is EDS treated?

Unfortunately for sufferers, there is no known cure for EDS at this time. Patients are treated by managing symptoms, which may include medical or physical therapy to help regulate chronic pain and supplements to help maximize bone and muscle health.

Many patients are also advised to make lifestyle changes to help prevent injury, including using braces, canes, wheelchairs, and scooters to aid in mobility. Other suggestions often include avoiding contact sports and lifting heavy objects, using sunscreen, and avoiding harsh soaps and lotions to help protect fragile skin and joints.

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