Ehlers Danlos Syndrome

What is Ehlers Danlos Syndrome (EDS)?

Ehlers Danlos Syndrome is the name for a group of connective tissue disorders. These disorders are inherited. There are several types of EDS, but most people with EDS have the following:

• joint hypermobility (joints move more than what is considered a normal range)
• skin hyperextensibility (skin stretches more than normal)
• tissue fragility

13 Sub-types of EDS

Each sub-type of EDS has certain characteristics, and many of them overlap. Some sub-types are very rare. The most common sub-type is Hypermobile EDS (hEDS). Sub-types in bold typically have orthopedic involvement (involving bones, joints, muscles, etc.)

1. Classical EDS
2. Classical-Like EDS
3. Cardiac Valvular EDS
4. Vascular EDS
5. Dermatosparaxis EDS
6. Arthrochalasia EDS
7. Spondylodysplastic EDS
8. Brittle Cornea Syndrome
9. Musculocontractural EDS
10. Myopathic EDS
11. Kyphoscoliotic EDS
12. Periodontal EDS
13. Hypermobile EDS

The Ehlers Danlos Society provides specific details about each type here.

What Other Conditions are Linked to EDS?

• chronic musculoskeletal pain
• chronic fatigue syndrome
• dysautonomia – dysfunction of the autonomic nervous system. The autonomic nervous system is NOT under voluntary control, and includes fight/flight and rest/digest mechanisms.
• POTS (Postural Orthostatic Dysautonomia Syndrome) – a type of dysautonomia that relates to challenges maintaining blood flow and pressure throughout the body, especially when going from lying down to standing up.
• Gastrointestinal upset and/or disorder
• cranio-cervical instability – decreased stability of the joints at the top of the neck and base of the skull
• mental health conditions (ex: depression, anxiety)

This is not an exhaustive list of conditions. You can read about more here. Those who have a diagnosis of EDS can have varying presentations or secondary conditions.

How Do Physical Therapists Play a Role in EDS Management?

Physical therapists are important when living with EDS. They can help:

• decrease acute or chronic pain associated with EDS
• improve alignment and postural awareness to support hypermobile joints
• provide and practice optimal movement strategies to protect vulnerable tissues
• improve strength and endurance to help support tissues
• suggest and provide support in the form of bracing, taping, compression garments
• improve functional mobility through training and modification
• provide strategies to help with dysautonomia/POTS symptoms
• recognize secondary conditions (ex: cranio-cervical instability) and refer to the appropriate provider to manage these conditions

If you have EDS and are seeking out a physical therapist, it is crucial to find a PT who understands EDS. Treatment should ALWAYS be individualized.

Do the Physical Therapists at Compleo Treat EDS?

Yes, At Compleo our physical therapists understand and treat EDS! Dr. Baas has experience and specific training in treating pediatric chronic pain, while Dr. Roeger has experience and specific training treating adult chronic pain. Both follow the Ehlers Danlos Society and participate in continuing education related to EDS.

At Compleo we strive to provide excellent care, and we are dedicated to making sure we are the right fit for you. Call at 254-892-4957 us to schedule a free discovery visit!