Ehlers-Danlos syndromes (EDS) are 13 individual conditions that affect the body’s connective tissue.
In people with EDS, a genetic mutation has caused a connective tissue, usually a type of collagen, in the body to become fragile and stretchy.
Connective tissues are there to provide support throughout the body – in skin, tendons, ligaments, blood vessels, internal organs, and bones.
Therefore, EDS causes a vast range of symptoms felt across the body.
Depending on the type of EDS you have, your symptoms will vary.
Hypermobile EDS (also known as hEDS) is the most common type of EDS.
According to the NHS, there are nine symptoms that can signal hEDS.
These are:
- Joint hypermobility
- Loose, unstable joints that dislocate easily
- Joint pain and clicking joints
- Extreme tiredness (fatigue)
- Skin that bruises easily
- Digestive problems, such as heartburn and constipation
- Dizziness and an increased heart rate after standing up
- Problems with internal organs, such as mitral valve problems or organ prolapse
- Problems with bladder control (urinary incontinence).
There is no way of testing for hEDS, so a diagnosis will be made based on a physical examination and a person’s medical history.
When to see a doctor
The NHS urges people to speak to their GP if they experience several “troublesome” symptoms.
“You do not usually need to worry if you only have a few symptoms and they’re not causing any problems,” it says.
“Joint hypermobility, for example, is relatively common, affecting around one in 30 people. It’s unlikely to be caused by EDS if you do not have any other symptoms.
“The 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 one of the rare types of EDS, the GP can refer you to your local genetics service for an assessment.”
There are some types of EDS that have overlapping symptoms.
These symptoms include:
- An increased range of joint movement (joint hypermobility)
- Stretchy skin
- Fragile skin that breaks or bruises easily.
The NHS explains: “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 one parent or both parents.
“Sometimes the faulty gene is not inherited, but occurs in the person for the first time.”
Ehlers-Danlos Syndrome News reports that EDS may affect 10 out of every 5,000 people, according to new research – making it more common than previously thought.