WHAT IS EHLER-DANLOS SYNDROME?

Learn more about how Ehlers-Danlos syndrome (a connective tissue disorder) is identified, diagnosed and treated.

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WHAT IS EHLERS-DANLOS SYNDROME?

EHLERS-DANLOS INFORMATION PAGE (PDF)

Ehlers-Danlos Syndrome (EDS) is a hereditary connective tissue disorder. It is caused by genetic changes that affect the connective tissue that stabilize and support the joints and organs throughout the body.

There are many different types of EDS, including the following:

Classical
Classical-like
Hypermobile (most common)
Cardiac-valvular
Vascular
Kyphoscoliosis
Arthrochalasia
Dermatosparaxis
Brittle cornea syndrome
Spondylodysplastic
Musculocontactural
Myopathic
Periodontal

WHAT ARE THE SYMPTOMS OF EHLERS-DANLOS SYNDROME?

Some common symptoms for EDS may include:

Join hypermobility (laxity)
Soft, stretchy or fragile skin
Slow/poor wound healing
Temporomandibular joint instability/pain
Dysautonomia
Chronic pain
Chronic fatigue
Easy bruising
Headaches
Cranio-cervical instability

HOW IS EHLERS-DANLOS SYNDROME DIAGNOSED?

The best way to get a diagnosis of Ehlers-Danlos syndrome is to see a clinical geneticist, but first, a comprehensive clinical evaluation and full medical history is required.

Ehlers-Danlos syndrome Type III is the most common. It is the hypermobile type. Usually, this type of Ehlers-Danlos syndrome is diagnosed either by a geneticist familiar with this type, or in the clinic using what doctors called the Beighton Score/Scale.

You can learn more about this score here: Beighton Score Validity Article

HOW IS EHLERS-DANLOS SYNDROME TREATED?

Currently, there is no cure—but there are many treatment types that can improve symptoms. A proper diagnosis allows the patient and their doctor to communicate well and come up with a good treatment plan.

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Reviewed on 12/2021