Ehlers-Danlos syndrome (EDS) is a group of inherited disorders that affect your connective tissues — primarily your skin, joints and blood vessel walls. Connective tissue is a complex mixture of proteins and other substances that provide strength and elasticity to the underlying structures in your body. EDS is classified into thirteen different subtypes depending on the genetic variant. However, there is often substantial overlap between subtypes. 

The prevalence of Ehlers-Danlos syndrome is one in 3,500 to 5,000 people. EDS is generally characterized by joint hypermobility - joints that move further than normal range, joint instability, partial separation of the articulating surfaces of a joint, dislocations, scoliosis, skin hyperextensibility and abnormal scarring. 

Of the thirteen subtypes, Hypermobile EDS (hEDS) is, by far, the most common. hEDS may be more common than we think because it is often misdiagnosed. For the purposes of this blog, we will focus on hEDS.

Symptoms of hEDS may include:

• joint pain, muscle pain, nerve pain

• loose unstable joints often prone to dislocation

• muscle tension and weakness

• hernias

• pelvic floor muscle weakness and prolapse

• hyperextensibility in skin

• fragile skin that bruises easily

• scarring, delayed wound healing

Physical Therapy (PT) can help manage hEDS symptoms. It is important to work with a provider that is familiar with your diagnosis. Patients need an individualized treatment plan based on their specific impairments and symptoms.

Since many hEDS symptoms involve joints, PT can help strengthen the muscles around each joint, providing support to the joint and helping to prevent dislocation and formation of arthritis. Core stability and endurance exercises are often effective for reducing pain and improving function. 

Pelvic floor PT can be especially effective for managing hEDS symptoms because this diagnosis may be accompanied by other co-morbidities such as:

• gastrointestinal issues

• bladder issues

• hernias

• organ prolapses through the pelvic floor

 With pelvic floor therapy, we address these issues by working on muscle coordination, strength, and function.  

Here are informational resources for people that suspect they have hEDS or have been diagnosed with EDS:

• https://www.ehlers-danlos.com/community-resources/

• https://www.hypermobility.org/

• https://theschooltoolkit.org/

• https://edswi.org/resources/physician-resources/

• https://www.beyondmybattle.org/

At Solstice Physiotherapy, we treat patients with EDS and hEDS. If you have questions and want to speak with one of our physical therapists, email us at info@solsticept.com or call (929) 269-2505 to schedule a free, 15-minute consultation.