Ehlers-Danlos syndromes explained

What Ehlers-Danlos syndromes are

Connective tissue is the body's scaffolding and glue, and much of its strength comes from a protein called collagen. In Ehlers-Danlos syndromes, genetic differences change how this tissue is made, so it can be weaker or more stretchy than usual. Because connective tissue is everywhere, EDS can affect many parts of the body, though how much varies a lot from person to person and between the different types. EDS is usually inherited, meaning it runs in families and is passed on through genes; a person is generally born with it, even if it is recognised only later. It is not caused by anything someone did or did not do. There are several recognised types, and identifying the type matters because it guides care and any needed monitoring.

Common signs and symptoms

The features people notice most often are very flexible joints (sometimes called being double-jointed), joints that dislocate or partly slip out easily, and joint pain. Skin can be soft, stretchy, or bruise easily, and wounds may heal slowly or leave thin scars. Many people also have long-term pain and tiredness, and some experience symptoms such as dizziness on standing or digestive problems. The most common form, the hypermobile type, mainly affects the joints and causes pain and fatigue. Rarer types can affect other tissues more seriously — for example the blood vessels or internal organs — which is why getting the right diagnosis and type matters. Symptoms often overlap with other conditions, so recognising the overall pattern is important.

How it is diagnosed

Diagnosis usually begins with a careful look at the person's symptoms, family history and a physical examination, including checking how flexible the joints are and how the skin behaves. For many of the rarer types, a genetic (DNA) test can confirm the specific type, and referral to a genetics or specialist service may be arranged. The most common hypermobile type is currently diagnosed from the clinical picture rather than a single test, using agreed criteria. Because EDS can look like other conditions, and because the different types need different care, it can take time to reach a clear diagnosis. Getting the right type identified helps guide which specialists are involved and whether any monitoring — for example of the heart or blood vessels in certain rarer types — is needed.

Managing EDS

There is no cure for EDS, so care focuses on managing symptoms, protecting the joints and tissues, and supporting quality of life. Physiotherapy is a cornerstone: gentle, graded exercises that strengthen the muscles around the joints can improve stability and reduce dislocations and pain. Occupational therapy can help with daily tasks, joint protection and pacing to manage fatigue. Pain is managed with a mix of approaches, and other symptoms — such as dizziness or digestive issues — are treated as needed. People with certain rarer types may need regular monitoring by specialists, for example of the blood vessels or heart. Good wound care and telling healthcare teams about the diagnosis before any surgery or procedure are important because tissues can be more fragile.

Living well with EDS

Many people with EDS lead full lives with the right support and a plan tailored to their type and symptoms. Staying active in a safe, guided way helps keep joints stable, while pacing activity helps manage fatigue and pain. Wearing supports or aids for certain joints, protecting the skin, and planning ahead for flare-ups can all help. Because EDS is inherited, some families choose to talk to a genetics service about what a diagnosis means for relatives. Support groups and charities offer practical advice and connection with others. The key is a coordinated approach — physiotherapy, pain management, and the right specialists — and knowing your specific type so that any needed monitoring is arranged. If new or worrying symptoms appear, seek medical advice.