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Ehlers-Danlos syndromes

Ehlers-Danlos syndromes (EDS) are a group of rare inherited conditions that affect connective tissue.

Connective tissues provide support in skin, tendons, ligaments, blood vessels, internal organs and bones.

There are several types of EDS that may share some symptoms.

These include:

EDS can affect people in different ways. For some, the condition is relatively mild, while for others their symptoms can be disabling.

The different types of EDS are caused by faults in certain genes that make connective tissue weaker.

Depending on the type of EDS, the faulty gene may have been inherited from 1 parent or both parents.

Sometimes the faulty gene is not inherited, but occurs in the person for the first time.

Some of the rare, severe types can be life threatening.

There are 13 types of EDS, most of which are very rare.

Hypermobile EDS (hEDS) is the most common type.

Other types of EDS include classical EDS, vascular EDS and kyphoscoliotic EDS.

The EDS Support UK website has more information about the different types of EDS.

Hypermobile EDS

People with hEDS may have:

Currently, there are no tests to confirm whether someone has hEDS.

The diagnosis is made based on a person's medical history and a physical examination.

Classical EDS

Classical EDS (cEDS) is less common than hypermobile EDS and tends to affect the skin more.

People with cEDS may have:

Vascular EDS

Vascular EDS (vEDS) is a rare type of EDS and is often considered to be the most serious.

It affects the blood vessels and internal organs, which can cause them to split open and lead to life-threatening bleeding.

People with vEDS may have:

Kyphoscoliotic EDS

Kyphoscoliotic EDS (kEDS) is rare.

People with kEDS may have:

See a GP if you have several troublesome symptoms of EDS.

You do not usually need to worry if you only have a few symptoms and they're not causing any problems.

Joint hypermobility, for example, is relatively common, affecting around 1 in 30 people. So it's unlikely to be caused by EDS if you do not have any other symptoms.

Your GP may refer you to a joint specialist (rheumatologist) if you have problems with your joints and they suspect EDS.

If there's a possibility you may have 1 of the rare types of EDS, your GP can refer you to your local genetics service for an assessment.

The local genetics specialist will ask about your medical history, family history, assess your symptoms and may carry out a genetic blood test to confirm the diagnosis.

If further investigation is needed, your hospital doctor can refer you to a specialist EDS diagnostic service based in Sheffield or London.

There's no specific treatment for EDS, but it's possible to manage many of the symptoms with support and advice.

People with EDS may also benefit from support from a number of different healthcare professionals.

For example:

Your GP or consultant can refer you to these services.

It's important to be careful about activities that put a lot of strain on your joints or put you at risk of injury.

But it's also important not to be overprotective and avoid living an otherwise normal life.

Advice will depend on which type of EDS you have and how it affects you:

EDS can be inherited, but in some cases it occurs by chance in someone without a family history of the condition.

The 2 main ways EDS is inherited are:

A person with EDS can only pass on the same type of EDS to their children.

For example, the children of someone with hypermobile EDS cannot inherit vascular EDS.

The severity of the condition can vary within the same family.

The following websites provide more information, advice and support for people with EDS and their families:

If you have EDS, your clinical team will pass information about you on to the National Congenital Anomaly and Rare Diseases Registration Service

This helps scientists look for better ways to prevent and treat this condition.

You can opt out of the register at any time.