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What to Know About Ehler’s Danlos Syndrome (EDS)

Updated: Jun 29, 2023

“For The Majority Of People With Hypermobile Ehlers-Danlos Syndrome (EDS), It Will Take An Average Of 10 Years To Be Diagnosed. We Can Do Something About It”

woman in white doing a split with one foot in the air

Ehlers-Danlos Syndrome (EDS) is a group of hereditary connective tissue disorders that which causes a change in the protein, collagen. Collagen gives structure to our connective tissue and maintains the integrity of most organ systems in our body, from our heart to our skin, to our ligaments, tendons, and muscles.

May is EDS awareness month, and awareness is essential to improve treatment for those with this condition. Low awareness and understanding of EDS means that many will be told that their pain is all in their head while others undergo unnecessary medical treatments and surgeries. Education will help, so I wanted to share some important information on this rare condition.

The most prevalent type of EDS, of which there are 13, is hypermobile EDS (hEDS). In clients with abnormal collagen, the ligaments are weak and lack stiffness and tendons are subject to tearing, compromising the stability of the joints. Treatment should be provided and exercise prescribed with this in mind.

The most commonly recognized symptom of hEDS is joint hypermobility with symptoms of musculoskeletal pain and complications of joint instability such as recurrent subluxations or dislocations. The disorder also comes with a host of associated co-morbidities, such as dysautonomia, gastrointestinal dysfunction, and mast cell activation disorder to name just a few. As physical therapists, we focus on the musculoskeletal dysfunction but need to make an effort to learn about each client’s medical history and how it plays a role in the overall care of the person. For instance, with postural orthostatic tachycardia syndrome, changes in body position may significantly impact the cardiovascular system, so the therapist may want to limit the positional changes within the session or reduce standing time.

The other important thing to consider is that symptoms and associated conditions vary widely between patients, and the severity of symptoms might be vastly different from one person to the next. Also, note that the clinical presentation changes with age as the pain from hypermobility and instability is exchanged with stiffness and joint degeneration.

Physical therapy plays an essential role in managing the chronic pain and musculoskeletal dysfunctions associated with Ehlers-Danlos Syndrome. A physical therapist can help you to strengthen weak muscles and stretch tight ones, as well as teach you how to modify your activities of daily living to reduce the impact of the condition. At Zion Physical Therapy, we specialize in the assessment and treatment of joint hypermobility, posture, and stability. We can help you manage fatigue, improve balance and coordination, and reduce the risk of injury.

With the help of your physical therapist and other healthcare providers, you can learn to manage the physical challenges of EDS and live your life to its fullest.

To find a specialist in your area, visit The Ehler-Danlos Society directory.

Please see the below Beighton Score chart to help you assess the condition.

graphic of the beighton score for diagnosing Ehlers-danlost syndrome

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