Ehlers-Danlos Syndrome (EDS)

Ehlers-Danlos syndrome (EDS) is a condition that affects the connective tissues in your body.

Connective tissues support your organs and hold parts of your body in place. They’re made of two proteins: collagen and elastin. Ehlers-Danlos syndrome makes your body produce weak collagen. This means your connective tissue can’t support you like it should. EDS can affect organs and tissue throughout your body, including your:

• Blood
• Bones
• Cartilage
• Fat

Types of Ehlers-Danlos syndrome

EDS can affect many different kinds of tissue. Some of the most common places can include your:

• Joints
• Muscles
• Skin

Healthcare providers classify EDS into 13 types based on where it affects you and the types of symptoms you experience. The five most common types include:

• Hypermobile EDS: This is the most common type. It makes your joints feel very loose. They might click or feel like they don’t fit together right all the time.
• Classical EDS: This is similar to hypermobile EDS. But it usually affects your skin more than hypermobile EDS.
• Classical-like EDS: This type gets its name because it’s so similar to classical EDS, but with tiny differences in the kinds of symptoms you’ll experience.
• Cardiac-valvular EDS: This is EDS that affects your cardiovascular system and heart valves. It also causes symptoms in your skin and joints.
• Vascular EDS: This is EDS that affects your blood vessels and their connections to your internal organs. It’s very rare and doesn’t cause hypermobile joints. It affects your blood vessels.

Ehlers-Danlos syndrome symptoms

Symptoms can vary depending on which type you have. Some of the most common EDS symptoms include:

• Bruising: You’ll bruise more easily or more often than usual, even from minor bumps.
• Digestive symptoms: You might have trouble controlling your pee or poop (incontinence). You may also develop irritable bowel syndrome (IBS).
• Fatigue: You may feel tired all the time, even if you’re getting a healthy amount of sleep.
• Hernias: You’ll have a higher risk of hernias if the connective tissue around your muscles isn’t as strong as it should be.
• Joint pain: Your joints may hurt all the time. Or pain may come and go.
• Muscle pain (myalgia): You might feel a constant dull ache or a more specific, sharp pain.
• Overly flexible (hypermobile) joints: It might feel like your joints are “loose” or aren’t strong enough to support you.
• Scarring too often: It may take small, everyday cuts and scrapes longer to heal. And you might develop scars more often than others do.
• Skin that’s softer and thinner than usual: Your skin might look and feel like pizza dough you can stretch too far. It might tear or break easily.
• Trouble concentrating: You might feel like you have brain fog or can’t focus on one activity for as long as you need or want to.

EDS causes

Ehlers-Danlos syndrome is a genetic condition. That means a genetic change causes it.

Experts have identified more than 20 different genetic changes that can cause EDS. They all affect your body’s ability to produce collagen. Which specific change you have determines which type you’ll develop and where it will affect you.

Risk factors for Ehlers-Danlos syndrome

Some types of EDS are inheritable. This means biological parents can pass the genetic changes that cause it to their children. Other types happen randomly (somatically) and can’t be passed through generations of a biological family.

You may have an increased risk of Ehlers-Danlos syndrome if one or both of your biological parents have it. Similarly, if you have EDS, you might pass it to your biological children.

Talk to a healthcare provider about your risk of inheriting or passing EDS in your biological family. Your provider might suggest genetic counseling.

EDS complications

Dislocations are the most common Ehlers-Danlos syndrome complication. Never try to push a joint back into place on your own if you think you have a dislocation. Go to the emergency room (ER) right away.

Some types of EDS can cause life-threatening complications. For example, vascular EDS can make your blood vessels rupture (tear). This can lead to dangerous internal bleeding and stroke.

Your risk of complications depends on which type of Ehlers-Danlos syndrome you have. Other complications can include:

• Bowed (curved) limbs
• Heart valve problems
• Scoliosis
• Thin corneas
• Tooth and gum issues

How doctors diagnose Ehlers-Danlos syndrome

A healthcare provider will diagnose EDS with a physical exam and by discussing your medical history. They’ll examine your skin and joints and ask you about the symptoms you’re experiencing. Tell your provider when you first noticed symptoms and if anything makes them worse.

What are Ehlers-Danlos syndrome treatments?

Your healthcare provider will suggest treatments for EDS that manage symptoms and prevent complications. Some common Ehlers-Danlos syndrome treatments include:

• Physical therapy to strengthen the muscles around your joints
• Wearing braces for extra joint support
• Wearing sunscreen and using mild soaps to protect your skin

Your provider might suggest you avoid certain intense physical activities, like:

• Contact sports
• High-impact exercise
• Lifting heavy objects

This can help you reduce the chances of experiencing a dislocation. You can still exercise and be active, but you may need to tweak or modify some activities to protect your joints.

When should I see my healthcare provider?

Visit a healthcare provider if you notice any changes in your body that make your skin or joints feel weak or loose. See your provider if you notice that you’re bruising or bleeding more often than you used to.

Your provider will tell you how often you’ll need follow-up visits to track any changes in your body. They’ll help you change your treatments as needed.

What can I expect if I have EDS?

You should expect to manage Ehlers-Danlos syndrome for the rest of your life. There’s no cure. But you should be able to participate in all your normal activities once you learn how to manage the symptoms.

EDS affects everyone differently. What you experience depends on which type you have and how it affects your body. Ask your provider what to expect based on your unique situation.