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What is it?

The Ehlers-Danlos syndromes (EDS) are heritable connective tissue disorders affecting the quality of collagen in every part of the body.

Sometimes the faulty gene isn’t inherited, but occurs in the person for the first time.

There are 13 types of Ehlers-Danlos syndrome, most of which are rare. The old diagnosis of Joint Hypermobility syndrome (JHS) is now considered part of the spectrum of Hypermobile EDS.

Hypermobile EDS is now understood as a multi-system disorder which can have a marked impact on health and which may help us to explain apparently mysterious multiple symptoms.

It is often misdiagnosed as fibromyalgia, chronic fatigue syndrome and other chronic illnesses.

What Does It Feel Like?

You feel like an old, rag doll that needs to be constantly stitched back together; like a young person’s mind inside a pensioners body. Just getting out of bed in the morning can be a struggle and it can make it impossible to lead a normal life.

You can feel like a fraud when one day you can do things like leave the house but the next your hands hurt or you can’t even stand up.

It’s difficult living with a condition that isn’t visible to others. There is a judgement that brings on self-hatred and sabotage just because you want to live a normal life but struggle. You can be considered lazy when actually you have EDS and it can make you depressed when people don’t understand it.

How Is It Diagnosed?

Poor awareness of EDS can mean a long, drawn-out diagnosis due to misdiagnosis. EDS can affect people in different ways. For some, the condition is relatively mild, while for others their symptoms can be disabling. Some of the rare severe types can be life-threatening.

The most common is thought to be Hypermobile EDS (hEDS) which is often thought to be the same as or very similar to another condition called joint hypermobility syndrome.
Symptoms might be: 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 prolapse or organ prolapse, problems with bladder control (stress incontinence).

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

For more on the different types of EDS see the links at the bottom of this page.

What Treatments Are Available?

The key role of the GP is in diagnosing hEDS/HSD, validating the patient’s symptoms and co-ordinating care. hEDS/HSD isn’t as rare as you may think.

 

Current treatment options for EDS include: physical therapy (used to rehabilitate those with joint and muscle instability), surgery to repair damaged joints and drugs to minimize pain.

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

 

For more information see

https://www.ehlers-danlos.org/what-is-eds/

https://www.nhs.uk/conditions/ehlers-danlos-syndromes/

https://www.ehlers-danlos.com/eds-types/#chart

 

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PRODUCED JANUARY 2018 UPDATED JULY 2018,

REVIEW DATE JANUARY 2019