What to Know About Ehlers Danlos Syndrome (EDS)

By Meghan Mizrachi, Clinic Manager at Zion Physical Therapy

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.

Awareness is essential to improve treatment for those with this condition. Low awareness and understanding of EDS and its symptoms 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.

Classical EDS Types

Ehlers-Danlos Syndrome 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.

The most prevalent EDS types, of which there are 13, is hypermobile EDS (hEDS), formerly known as EDS type 3. 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.

Other types, like EDS type 4, have other symptoms in addition to acrogeria and other observable conditions. In this case, vascular EDS symptoms include severe uterine, digestive, and arterial complications, which are not often seen in EDS types outside of Type 4.

Hypermobile EDS Symptoms

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. 

Treatment Suggestions for Hypermobile EDS

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 suffering from EDS symptoms. 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 EDS 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.

The Beighton Score, shown below, is the most well known criterion for assessment and determining whether the patient is suffering from hypermobile EDS, vascular EDS, or another type. But, it is only one of many factors taken into account such as skin hyperextensibility, atrophic scarring, dental crowding, velvety skin, positive family history, and many more.

Physical Therapy Can Address EDS Symptoms

Individuals with EDS have weak joints and connective tissues which makes them more likely to dislocate. Therefore, physical therapy will provide appropriate exercises to strengthen the muscles and stabilize the joints. Physical therapy can also provide education recommendations regarding specific braces to help prevent joint dislocation. 

If you have any suspicion that you might have a hypermobility syndrome or connective tissue disorder, find a physical therapy specialist in your area using the BetterPT website or app. With hypermobile EDS, knowledge truly is power as treatment must be viewed holistically and you can become a better self-advocate for your care. 

Though there is yet to be a “cure,” physical therapy remains the hallmark of treatment. At specialty clinics like Zion Physical Therapy, who are a part of the BetterPT family of physical therapists, they take the time to learn about the unique differences in the provision of care for a client with hypermobile Ehlers-Danlos Syndrome. Rest assured that with the right physical therapist, you can treat EDS symptoms and reduce discomfort for an improved quality of life.