Ehlers-Danlos syndromes

A debate will be held in Westminster Hall on Thursday 26 March 2026 on outcomes for patients with Ehlers-Danlos syndromes and craniocervical instability. The subject of the debate was chosen by the Backbench Business Committee, and the debate was proposed by Josh Newbury MP (Lab).

What are Ehlers-Danlos syndromes?

Ehlers-Danlos syndromes (EDS) are a group of inherited (genetic) health conditions, that affect the body's connective tissues. Connective tissues are found throughout the human body. They connect, support and bind other body tissues and structures together.

There are different types of EDS but people with these conditions often experience similar symptoms. Common symptoms across most types of EDS include:

• increased range of joint movement (known as ‘hypermobility’)
• stretchy skin
• fragile skin that bruises and breaks easily

The most common type of EDS is hypermobile EDS (hEDS), which can cause a wide range of symptoms, including joint hypermobility, pain, fatigue, digestive problems and problems with internal organs.

The Ehlers-Danlos Society explains the wide range of symptoms that people with specific types of EDS can experience. EDS can affect many different body systems. While symptoms can be mild for some individuals, for others, the condition can result in serious disability.

There is no specific treatment for EDS. The NHS says that people living with EDS may need to adapt their lifestyles to avoid activities that put them at risk of joint strain or injury. People with EDS may also benefit from support from different health professionals. Depending on their individual symptoms, this might include support from physiotherapists, occupational therapists, counselling or cognitive behavioural therapy (CBT), and genetic counselling.

What is craniocervical instability?

Craniocervical instability (CCI) is a health condition involving excessive movement at the top of the spine when someone moves their head. People with EDS may be at increased risk of experiencing CCI.

The Ehlers-Danlos Society says that more research is needed to estimate how many people with EDS are affected by CCI.

The NHS has not published any specific guidance for patients with CCI. The government says that CCI is a complex condition and that it is managed and treated “through existing specialised neurology and spinal pathways”.

How common are EDS?

Historical estimates of the number of people affected by EDS suggest that the syndromes meet the definition of a ‘rare’ condition, affecting fewer than 1 in 2000 people. Estimates of the prevalence of EDS vary, depending on how many types of EDS are included.

However, recent international and UK-based research suggests that EDS are more common than previously thought. For example:

• a study using patient records covering the period 1990 to 2017 in Wales estimated that around 2 per 100,000 people were living with EDS (almost 4 in 2000 people)
• a 2024 study of around 300,000 primary care records in Northumberland estimated that around 4 in 1,000 people were diagnosed with a range of forms of hypermobility (almost 9 in 2000 people)

The Ehlers-Danlos Society has published more information about historical and recent estimates of the prevalence of different types of EDS.

How are EDS diagnosed?

The NHS website advises people who have symptoms of EDS to see their GP. GPs can refer patients to specialists like rheumatologists (who treat joint and soft tissue problems). If a clinician suspects that someone has a rare type of EDS, they can refer the patient for genetic testing. NHS England commissions two specialist diagnostic centres for this, based in Sheffield and North West London.

What are the concerns about EDS diagnoses?

The charity Ehlers-Danlos Support UK (EDS UK) says that people with EDS often face a "long and convoluted" path to diagnosis and that many people with EDS are misdiagnosed with conditions that can cause some similar symptoms, like fibromyalgia, chronic fatigue syndrome (ME/CFS) and irritable bowel syndrome (IBS). The charity argues that diagnosis is important for patients because the disorder is genetic and can be passed on to children, and because people with EDS may need to avoid some physical activities that could damage their joints.

Many MPs also raised concerns about delayed diagnosis during a May 2024 Westminster Hall debate.

The EDS UK Enough is Enough campaign is focused on improving diagnosis and management of EDS in the UK.

What is the government doing for people affected by EDS and CCI?

In January 2026, the government said that it recognised that EDS are complex, multi-systemic conditions that can be challenging to diagnose. It attributed the problem to low awareness of the conditions among clinicians, the absence of a single diagnostic test, and the need to involve different types of healthcare professionals.

The government pointed to its specialist genetic diagnostic centres for rare EDS and to the Royal College of General Practitioners’ EDS GP Toolkit, which was developed with the charity EDS UK.

In relation to services for EDS patients, the government says that local integrated care boards are responsible for commissioning health services to meet the needs of their local populations.

The government says it is engaging with patient groups, charities and MPs on the issues facing people with EDS and CCI.