Ehlers Danlos Syndromes

What are the Ehlers Danlos syndromes?

The Ehlers Danlos syndromes (EDS) are a group of conditions that affect the connective tissue in the body. There are 13 different types of EDS that vary in how they affect the body.

• Classical EDS (cEDS)
• Classical-like EDS (clEDS)
• Cardiac-valvular EDS (cvEDS)
• Vascular EDS (vEDS)
• Hypermobile EDS (hEDS)
• Arthrochalasia EDS (aEDS)
• Dermatosparaxis EDS (dEDS)
• Kyphoscoliotic EDS (kEDS)
• Brittle Cornea Syndrome (BCS)
• Spondylodysplastic EDS (spEDS)
• Musculocontractural EDS (mcEDS)
• Myopathic EDS (mEDS)
• Periodontal EDS (pEDS)

What causes Ehlers Danlos syndrome?

Ehlers Danlos syndrome is caused by a change in the protein called collagen. This protein is an important part of connective tissue found in skin, ligaments, tendons, and blood vessels. Connective tissue gives structure and support to all parts of the body.

What are the signs of Ehlers Danlos syndrome?

The signs and symptoms of Ehlers Danlos syndrome can vary greatly, but generally involve the joints and skin and may include.  

• Flexible joints/Joint hypermobility. See education sheet titled hypermobility and your body (https://www.childrensmn.org/educationmaterials/childrensmn/article/17869/hypermobility-and-your-body-).
• Stretchy skin
• Abnormal scars
• Joint pain
• Fragile tissue with easy bruising

How is it diagnosed?

Ehlers Danlos syndrome is diagnosed by a health care provider familiar with connective tissue disorders. There is a lot of overlap of symptoms between EDS and other connective tissue disorders, including hypermobility spectrum disorders (https://www.childrensmn.org/educationmaterials/childrensmn/article/18012/hypermobility-spectrum-disorders). They will learn about your child’s symptoms, complete a physical exam, obtain a family history, and may recommend genetic testing (except for hypermobile EDS – no genetic testing available).

How should I care for my child?

Children with Ehlers Danlos syndrome often benefit from treatment to help prevent joint injury and to manage pain.

• Physical therapy is helpful to build strength in the muscles around the joints and stabilize the joints.
• Treatment of pain.

What else do I need to know?

For more information, refer to the Ehlers Danlos Society website (https://www.ehlers-danlos.com).

Questions?

This information is not specific to your child but provides general information. If you have any questions, please call your clinic.

Updated 10/19

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