What Is Ehlers Danlos Syndrome?
Start writing a post

If you keep up with celebrity gossip you may have heard of Ehlers Danlos Syndrome. Within the past year or so, several celebrities have opened up about their personal struggle and experience with this medical collection. These celebrities include actress and activist Jameela Jamil, "RuPaul's Drag Race" season 11 winner Yvie Oddly, actress Lena Dunham, and singer-songwriter Sia. But what even is Ehlers Danlos Syndrome and if celebrities have it then why is it never talked about? As someone who has Ehlers Danlos Syndrome, it was incredibly comforting to know that there are other people out there in the public eye who are like me.

However, there are still plenty of people who still have absolutely no idea that this medical condition even exists. The only way to bring awareness to this condition is to inform, advocate, and educate.

1. It's all about connective tissues

Ehlers Danlos Syndrome (EDS) is defined as "a group of disorders that affect the connective tissues supporting the skin, bone, blood vessels, and many other organs and tissues." This can result in a variety of symptoms including loose joints, fragile skin that is velvety and highly elastic, muscle pain and fatigue, and heart valve problems. EDS is a genetically inherited condition but can also be the result of spontaneous gene mutations.

2. There is more than one type of Ehlers Danlos Syndrome.


Ehlers Danlos Syndrome is a broad term for a variety of disorders. According to the 2017 International Diagnostic Criteria there are 13 EDS subtypes and each subtype is unique and has specific criteria for diagnosis. The most common subtype is Hypermobile Ehlers Danlos Syndrome (hEDS) along with Vascular and Classic EDS. The remaining types are typically pretty rare and include Classical-like EDS, Cardiac-valvular EDS, Arthrochalasia EDS, Dermatosparaxis EDS, Kyphoscoliotic EDS, Brittle Cornea Syndrome. Spondlodysplastic EDS, Musculocontractual EDS, Myopathic EDS, and Peridontal EDS.

3. Ehlers Danlos is a rare condition 

Ehlers Danlos Syndrome is classified as a rare condition by the National Organization for Rare Disorders. All subtypes combined can be found in approximately 1 in 5,000 people around the world. The hypermobile subtype affects anywhere from 1 in 5,000 to 1 in 20,000 people. The classical subtype most likely affects 1 in 20,000 to 40,000 people. Only about 60 cases of Kyphoscoliotic EDS have ever been reported.

4. People with Ehlers Danlos most likely have another chronic condition 

Most people who have been diagnosed with Ehlers Danlos also have another chronic condition. For example, I have Ehlers Danlos Syndrome and I also have fibromyalgia (a chronic pain disorder). The presence of two or more chronic diseases in a patient is called a comorbidity. Common EDS comorbidities include Postural Orthostatic Tachycardia Syndrome (a condition that affects circulation and the autonomic nervous system), gut dysmotility (malfunctioning of the involuntary muscles that facilitate digestion.), anxiety, small fiber neuropathy (nerve damage resulting in chronic pain), various sleep disorders, and craniocervical instability (joint instability at the top of the neck).

5. Ehlers Danlos Syndrome can present itself in different ways 

Ehlers Danlos Syndrome does not affect every person the same way. Some people are able to pace themselves, manage their pain well, and live fairly normal and healthy lives. Others may be bed or wheelchair-bound, unable to work, and rely on a caregiver. Ehlers Danlos Syndrome is a spectrum and everyone experiences the illness in a different way. Most people with EDS are able to mask their pain and go about their day. However, this does not mean that they are not "actually sick" or not suffering. They may just be really good at hiding it.

6. There is no cure for Ehlers Danlos Syndrome


Ehlers Danlos Syndrome is considered to be a chronic illness. This means that it is persistent and does not go away. There is currently no cure for EDS. With that being said, the goal for those with EDS is to manage their symptoms. The most common treatments for Ehlers Danlos Syndrome include physical therapy to strengthen muscles and reduce the risk of dislocation and other injuries, wearing braces or splints, steroids, pain medications, surgery, and various lifestyle changes such as avoiding contact sports.

7. People who have Ehlers Danlos constantly suffer with chronic pain 

People with EDS experience chronic pain. This pain can be widespread or in a specific limb or joint and ranges from joint, muscle, and nerve pain. Those with EDS also commonly experience chronic headaches or gastrointestinal pain. With that being said, most people with Ehlers Danlos regularly take medication to try and manage their chronic pain.

8. It can be incredibly hard to get a diagnosis 

There is an old saying commonly taught in medical school that says "when you hear the sound of hooves, think horses, not zebras." This essentially means that if a patient is presenting symptoms for a large variety of medical conditions, it is more likely that is not something rare. Because EDS is considered to be a rare condition, doctors are often very hesitant to diagnose a patient with it. People with Ehlers Danlos Syndrome (myself included) are often misdiagnosed with medical conditions such as amplified pain syndrome, depression, chronic fatigue syndrome, insomnia, and hypochondriasis. There are only a handful of doctors in the country that specialize in diagnosing Ehlers Danlos. The most common way to diagnose Ehlers Danlos Syndrome is through genetic testing.

9. People with Ehlers Danlos Syndrome get hurt more often and heal slower 

Until I was diagnosed with EDS I thought I was just clumsy because I was CONSTANTLY getting hurt. I usually made a trip to urgent care every other week for a jammed finger or a sprained ankle. I realized something was not right with my body when I dislocated my knee while getting my purse out of a car. Not only do those with EDS get injured more often but they also heal slower due to joint laxity.

Report this Content
Robert Bye on Unsplash

I live by New York City and I am so excited for all of the summer adventures.

Keep Reading... Show less

The invention of photography

The history of photography is the recount of inventions, scientific discoveries and technical improvements that allowed human beings to capture an image on a photosensitive surface for the first time, using light and certain chemical elements that react with it.


The history of photography is the recount of inventions, scientific discoveries and technical improvements that allowed human beings to capture an image on a photosensitive surface for the first time, using light and certain chemical elements that react with it.

Keep Reading... Show less
Health and Wellness

Exposing Kids To Nature Is The Best Way To Get Their Creative Juices Flowing

Constantly introducing young children to the magical works of nature will further increase the willingness to engage in playful activities as well as broaden their interactions with their peers


Whenever you are feeling low and anxious, just simply GO OUTSIDE and embrace nature! According to a new research study published in Frontiers in Psychology, being connected to nature and physically touching animals and flowers enable children to be happier and altruistic in nature. Not only does nature exert a bountiful force on adults, but it also serves as a therapeutic antidote to children, especially during their developmental years.

Keep Reading... Show less
Health and Wellness

5 Simple Ways To Give Yourself Grace, Especially When Life Gets Hard

Grace begins with a simple awareness of who we are and who we are becoming.

Photo by Brooke Cagle on Unsplash

If there's one thing I'm absolutely terrible at, it's giving myself grace. I'm easily my own worst critic in almost everything that I do. I'm a raging perfectionist, and I have unrealistic expectations for myself at times. I can remember simple errors I made years ago, and I still hold on to them. The biggest thing I'm trying to work on is giving myself grace. I've realized that when I don't give myself grace, I miss out on being human. Even more so, I've realized that in order to give grace to others, I need to learn how to give grace to myself, too. So often, we let perfection dominate our lives without even realizing it. I've decided to change that in my own life, and I hope you'll consider doing that, too. Grace begins with a simple awareness of who we are and who we're becoming. As you read through these five affirmations and ways to give yourself grace, I hope you'll take them in. Read them. Write them down. Think about them. Most of all, I hope you'll use them to encourage yourself and realize that you are never alone and you always have the power to change your story.

Keep Reading... Show less

Breaking Down The Beginning, Middle, And End of Netflix's Newest 'To All The Boys' Movie

Noah Centineo and Lana Condor are back with the third and final installment of the "To All The Boys I've Loved Before" series


Were all teenagers and twenty-somethings bingeing the latest "To All The Boys: Always and Forever" last night with all of their friends on their basement TV? Nope? Just me? Oh, how I doubt that.

I have been excited for this movie ever since I saw the NYC skyline in the trailer that was released earlier this year. I'm a sucker for any movie or TV show that takes place in the Big Apple.

Keep Reading... Show less

4 Ways To Own Your Story, Because Every Bit Of It Is Worth Celebrating

I hope that you don't let your current chapter stop you from pursuing the rest of your story.

Photo by Manny Moreno on Unsplash

Every single one of us has a story.

I don't say that to be cliché. I don't say that to give you a false sense of encouragement. I say that to be honest. I say that to be real.

Keep Reading... Show less
Politics and Activism

How Young Feminists Can Understand And Subvert The Internalized Male Gaze

Women's self-commodification, applied through oppression and permission, is an elusive yet sexist characteristic of a laissez-faire society, where women solely exist to be consumed. (P.S. justice for Megan Fox)

Paramount Pictures

Within various theories of social science and visual media, academics present the male gaze as a nebulous idea during their headache-inducing meta-discussions. However, the internalized male gaze is a reality, which is present to most people who identify as women. As we mature, we experience realizations of the perpetual male gaze.

Keep Reading... Show less

It's Important To Remind Yourself To Be Open-Minded And Embrace All Life Has To Offer

Why should you be open-minded when it is so easy to be close-minded?


Open-mindedness. It is something we all need a reminder of some days. Whether it's in regards to politics, religion, everyday life, or rarities in life, it is crucial to be open-minded. I want to encourage everyone to look at something with an unbiased and unfazed point of view. I oftentimes struggle with this myself.

Keep Reading... Show less
Facebook Comments