Hypermobile Ehlers Danlos Syndrome

What is Hypermobile Ehlers Danlos syndrome?

Hypermobile Ehlers Danlos syndrome (hEDS) is a condition that affects the connective tissue in the body. It is one of 13 different types of EDS.

What causes Hypermobile Ehlers Danlos syndrome?

The exact cause of Hypermobile Ehlers Danlos syndrome isn’t clear but is likely caused by an abnormality in the protein, collagen. Collagen 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 Hypermobile Ehlers Danlos syndrome?

The signs of Hypermobile Ehlers Danlos syndrome generally involve the joints and skin.  

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

How is it diagnosed?

Hypermobile 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/). Hypermobile EDS has specific criteria (https://ehlers-danlos.com/wp-content/uploads/hEDS-Dx-Criteria-checklist-1.pdf). There is no genetic testing available for hEDS. The health care provider evaluating your child will make a diagnosis based on your child’s symptoms, physical exam, and family history.

How should I care for my child?

Children with hypermobile 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.
• Pain treatment.

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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