Understanding Ehlers-Danlos Syndrome: Symptoms, Diagnosis and Support

May is Ehlers-Danlos Syndrome Awareness Month, an important opportunity to increase understanding of this often misunderstood condition and support those living with its daily challenges.

At Westbourne Medical Studios, we understand how frustrating it can be to live with unexplained pain, fatigue and ongoing health concerns. For many people, these symptoms may be linked to Ehlers-Danlos Syndrome (EDS), a group of inherited conditions that affect the body’s connective tissues.

Connective tissues provide strength and support to the skin, joints, blood vessels and organs. When these tissues are affected, it can lead to a wide range of symptoms that impact everyday life. Because Ehlers-Danlos Syndrome can vary greatly from person to person, diagnosis is sometimes delayed or overlooked.

Our aim during EDS Awareness Month is to help patients better understand Ehlers-Danlos Syndrome, recognise the signs and know when to seek specialist support.

Ehlers-Danlos Syndrome refers to a group of genetic conditions that mainly affect collagen, an important protein that gives structure and elasticity to connective tissue.

There are several different types of Ehlers-Danlos Syndrome, but the most common is hypermobile Ehlers-Danlos Syndrome (hEDS). While symptoms can range from mild to more severe, many people experience ongoing joint problems, chronic pain and fatigue.

Because Ehlers-Danlos Syndrome affects connective tissue throughout the body, symptoms can involve multiple systems, including the muscles, joints, skin, digestive system and cardiovascular system.

The symptoms of Ehlers-Danlos Syndrome can differ significantly between individuals. Some people may only experience mild joint hypermobility, while others may face more complex health challenges.

Common symptoms include:

• Joint hypermobility or unusually flexible joints
• Frequent joint dislocations or sprains
• Chronic joint and muscle pain
• Fatigue and low energy levels
• Soft or stretchy skin
• Easy bruising
• Slow wound healing
• Digestive symptoms such as bloating or reflux
• Dizziness or fainting episodes

Many patients tell us they have struggled for years without clear answers. Because symptoms often overlap with other conditions, a thorough medical assessment is important.

Diagnosing Ehlers-Danlos Syndrome is not always straightforward. There is currently no single test for hypermobile Ehlers-Danlos Syndrome, so diagnosis is usually based on clinical assessment, medical history and symptom patterns.

Patients are sometimes told their symptoms are simply due to flexibility, anxiety or growing pains, particularly during childhood or adolescence. However, persistent symptoms should never be ignored.

At Westbourne Medical Studios, we take a patient-centred approach to understanding complex symptoms. We know how important it is to listen carefully and assess the wider picture to help patients receive the right support and guidance.

Although there is currently no cure for Ehlers-Danlos Syndrome, many people can manage their symptoms effectively with the right care and lifestyle support.

Treatment plans are usually tailored to the individual and may include:

Physiotherapy and Joint Support

Specialist physiotherapy can help strengthen muscles, improve stability and reduce the risk of injury. Learning how to protect hypermobile joints is often an important part of long-term management.

Pain Management

Chronic pain is a common challenge for people with Ehlers-Danlos Syndrome. Pain management strategies may include physiotherapy, lifestyle changes, pacing activities and medical support where appropriate.

At Westbourne Medical Studios, we have an experienced acupuncturist who specialises in supporting patients with Ehlers-Danlos Syndrome. Acupuncture may help some patients manage chronic pain, digestive issues and overall wellbeing as part of a personalised treatment approach.

Fatigue Management

Fatigue can significantly affect quality of life. Managing energy levels, improving sleep habits and addressing associated conditions can all play a role in helping patients feel more in control.

Multidisciplinary Care

Because Ehlers-Danlos Syndrome can affect different parts of the body, patients may benefit from support across multiple specialties. Coordinated care can help ensure symptoms are managed more effectively and holistically.

If you experience ongoing joint pain, repeated injuries, unexplained fatigue or symptoms linked to hypermobility, it may be worth seeking medical advice.

Early assessment can help patients better understand their symptoms and access appropriate support sooner. While living with Ehlers-Danlos Syndrome can feel overwhelming at times, the right guidance and management strategies can make a meaningful difference.

At Westbourne Medical Studios, we are committed to providing compassionate, personalised care for patients living with complex and chronic health conditions. We believe that feeling heard, understood and supported is an important part of every patient journey.

What causes Ehlers-Danlos Syndrome?
Ehlers-Danlos Syndrome is caused by inherited genetic changes that affect the body’s connective tissues and collagen production.

Is Ehlers-Danlos Syndrome hereditary?
Yes, many forms of Ehlers-Danlos Syndrome are inherited and can run in families, although symptoms may vary between relatives.

Can acupuncture help with Ehlers-Danlos Syndrome symptoms?
Some patients find acupuncture helpful for managing chronic pain, muscle tension, digestive issues and stress linked to Ehlers-Danlos Syndrome. At Westbourne Medical Studios, our acupuncturist, Nina, specialises in supporting patients with EDS as part of a personalised care plan. She also has EDS herself so has lived experience of the condition.

When should I seek help for hypermobility or chronic pain?
If joint pain, frequent injuries, fatigue or hypermobility are affecting your daily life, it is important to seek medical advice for a proper assessment and support plan.