Ehlers-Danlos syndromes

Also called EDS, hEDS, Hypermobile Ehlers-Danlos syndrome

Faulty connective tissue, so joints, skin and blood vessels are too stretchy. Frequently dismissed for years.

What it is

Connective tissue is the scaffolding holding the body together. In the Ehlers-Danlos syndromes, the collagen in it is built differently, so the scaffolding stretches when it should hold.

There are several types. The hypermobile type is much the commonest and, awkwardly, the only one without a known genetic test, which is one reason people spend an average of over ten years getting diagnosed.

That decade is not neutral. It is usually spent being told the pain is anxiety.

Signs you might notice

Joints that move beyond the normal range, and that dislocate or partially dislocate easily.

Chronic joint pain, and fatigue that is out of proportion to activity.

Soft, stretchy skin, that bruises easily and scars poorly.

Dizziness on standing, which is often PoTS, a very common travelling companion.

Gut problems: reflux, bloating, constipation, IBS-type symptoms.

How it can affect day-to-day life

Being disbelieved is a defining part of this condition, and it changes how people use healthcare. After enough dismissals they stop reporting things, which is dangerous in a condition with genuine cardiac and vascular risks in some types.

Physiotherapy that treats it like ordinary hypermobility can make things worse. The muscles have to do the job the ligaments cannot, and that requires slow, careful strengthening, not stretching.

Fatigue and chronic pain usually cost more function than the dislocations do.

Supporting someone well

Believe the person. Again, this is the intervention with the biggest effect.

Strengthen, do not stretch. Find a physiotherapist who knows hypermobility, and go slowly. Progress here is measured in months.

Pace deliberately, using the same boom-and-bust logic as chronic pain.

Protect joints with supports and joint-friendly technique rather than avoiding movement altogether.

Flag it before any surgery, dental work or anaesthetic. Local anaesthetic often works less well, healing is slower, and surgeons need to know.

Watch for PoTS. Increased fluid and salt, compression garments and a proper tilt-table assessment can transform daily function.

Where to get help

A GP can assess hypermobility using the Beighton score and refer to rheumatology or genetics.

Ehlers-Danlos Support UK produce clinical toolkits written for GPs, which are genuinely useful to take to an appointment.

The vascular type is rare and serious. If there is a family history of arterial rupture or sudden death, say so explicitly and ask for genetics.