Hypermobile Ehlers-Danlos Syndrome (hEDS) is a condition that affects the body’s connective tissue, which supports your joints, skin, and organs. People with hEDS often have very flexible joints, stretchy skin, and chronic pain. It’s the most common type of Ehlers-Danlos Syndrome, and it can affect people in many different ways.

If you or someone you care about is dealing with hypermobile EDS, understanding the condition is the first step toward better management and support. Let’s break it down in simple, easy-to-understand terms.

What Is Hypermobile EDS?

Hypermobile EDS is a genetic disorder that affects how your body’s connective tissue is built. Connective tissue acts like glue, helping hold everything in place—from your skin and muscles to your internal organs and blood vessels.

In people with hEDS, the connective tissue is weaker than normal. This can make joints extra flexible (or “hypermobile”), skin more stretchy, and healing more difficult.

Unlike some other types of EDS, there is no single genetic test that can confirm hypermobile EDS. That makes diagnosis a bit more complicated.

Signs and Symptoms of hEDS

The symptoms of hEDS can vary widely. Some people have mild symptoms, while others may face daily challenges. Here are the most common signs:

Joint-Related Symptoms

Joints that move more than they should (hypermobility)
Frequent dislocations or subluxations (partial dislocations)
Joint pain that comes and goes—or sticks around
Early onset of arthritis or joint instability

Skin Symptoms

Soft or slightly stretchy skin
Skin that bruises easily
Slow healing from cuts or surgery

Other Symptoms

Chronic fatigue
Muscle pain or weakness
Digestive issues (like bloating, IBS, or reflux)
Dizziness or fainting (especially when standing up quickly)
Anxiety, especially related to body awareness (also called proprioception)

How Is hEDS Diagnosed?

Since there’s no genetic test for hEDS yet, diagnosis is based on a clinical evaluation. Doctors look at your medical history, family history, and physical signs.

To be diagnosed with hEDS, you usually must meet specific clinical criteria, including:

General joint hypermobility (measured with the Beighton score)
Symptoms affecting your skin, joints, or other organs
A lack of evidence for other types of EDS or similar conditions

Many people see multiple doctors before receiving a diagnosis, especially since the symptoms overlap with other conditions like fibromyalgia, chronic fatigue syndrome, or anxiety disorders.

What Causes hEDS?

The exact cause of hEDS is still unknown, which is different from most other types of Ehlers-Danlos Syndrome that have identified gene mutations.

Researchers believe it’s inherited, likely through a dominant genetic pattern—meaning that if one parent has hEDS, there’s a 50% chance of passing it to a child. However, more studies are needed to find the responsible genes and understand how it works.

Managing Life with Hypermobile EDS

While there’s no cure for hEDS, many people live full, meaningful lives with the condition. Management is focused on reducing symptoms and improving daily function.

1. Physical Therapy

A physical therapist can help strengthen muscles and improve joint stability. The right exercises can also reduce pain and prevent dislocations.

2. Pain Management

Pain can be managed with a mix of:

Over-the-counter or prescription medications
Heat and cold therapy
Massage or acupuncture
Mind-body techniques like mindfulness or yoga

3. Lifestyle Modifications

Avoid high-impact sports or repetitive motions
Use joint braces or supports when needed
Break tasks into smaller steps to reduce strain
Choose low-impact activities like swimming or pilates

4. Digestive and Autonomic Support

Work with a gastroenterologist or cardiologist if you have gut issues or symptoms of POTS (a condition affecting heart rate and blood pressure). Dietary changes, salt intake, and compression garments may help.

5. Mental Health Support

Living with chronic pain, fatigue, and uncertainty can be emotionally draining. Therapy, support groups, and online communities can offer comfort and helpful strategies.

How to Talk to Doctors About hEDS

Because hEDS isn’t always well understood, it can help to:

Bring a symptom diary to your appointments
List all the ways symptoms affect your daily life
Ask for referrals to specialists familiar with EDS

Don’t be afraid to advocate for yourself or your child. You deserve answers and compassionate care.

Living Well with hEDS: Realistic Hope

Although hypermobile EDS is a lifelong condition, many people find ways to manage their symptoms and thrive. A supportive care team, regular movement, and healthy routines can go a long way.

Research is ongoing, and as awareness grows, so does understanding. With patience and persistence, you can build a life that works for you.