From Ehlers-Danlos (EDS) to hypermobility spectrum disorders (HSD), physical therapy is a keystone in managing the complexities that come along with these diagnoses
What characterizes an HSD and/or EDS:
HSD/EDS disorders are rare conditions that affect about 1 in 5000 people, but with advances in diagnostics and genetic testing, these disorders are becoming more popular to address within the realm of Physical Therapy.
One of the biggest characteristics of HSD/EDS disorders is that they are genetically inherited. Often, they are autosomal dominant, which means that if one parent possesses the gene, then there is about a 50% chance that their children will also inherit the condition, and if both parents do, then it is almost certain. Other variants of HSD/EDS have a less likely genetic occurrence but are rarer.
There are 13 established types of HSDs/EDS, with the most common being the hypermobility subtype.
The genetic mutations that cause HSD/EDS affect how collagen is created when synthesizing skin, tendons, ligaments, and even blood vessels, all of which are important for creating a supportive musculoskeletal system.
The mutations in collagen disrupt the strength and elasticity of these tissues, causing them to be stretchy yet brittle. These changes can lead to:
Hypermobility
Skin Fragility and hyperelasticity
Pain and Fatigue
Chronic complications
These changes are discussed further below, but it's important to acknowledge that a patient with these disorders can have a varying presentation and is not linear in nature. Patients with these disorders should be treated holistically and individually to maximize their outcomes.
Complications with these disorders
Common complications that are associated with HSD/EDS are conditions like POTS, dysautonomia, autoimmune disorders that affect various systems, sleep disorders, anxiety, etc.
With disorders like Orthostatic Hypotension, Dysautonomia and POTS (postural orthostatic tachycardia syndrome):
Patients often experience an increasing heart rate and change in blood pressure when getting up from bed or a chair. The body's natural response to positional changes is impaired, leading to dizziness, lightheadedness, fatigue, and/or exercise intolerance.
Most of these disorders result from the underlying disruption of the collagen makeup due to the genetic changes present in HSDs and EDS, since collagen makes up our vascular, digestive and other organ system soft tissues
How Physical Therapy Can Help
Physical therapists are key members of the multidisciplinary team that helps patients manage HSD and EDS. Primarily, physical therapists help manage the musculoskeletal side of these disorders. In addition, Physical therapists can help with managing common complications like persistent chronic pain, activity intolerance, and intolerance to positional changes as well.
Here is a small look at how PTs approach care for patients with HSD/EDS:
Improving Joint Stability:
Strengthing muscles around hypermobile joint to add stability to reduce the risk of dislocation and further injury
Proprioception
Using balance training, PTs can improve the patient's balance and body awareness to help patients move better and with decreased risk of falling as well as correct postural disturbances
Pain Management
Using a combination of approaches to care, like gentle movement and modalities to reduce inflammation, treating the patient with an individual approach to their pain experience is an important factor in care
Oftentimes the thought is to immediately strengthen joint areas to provide stability, however for those with HSD/EDS, this is more of the end goal. Intial treatment often is focused on gaining correct posture, ROM, and gentle flexibility to prime the muscles and ligaments for movement before beginning strength training.
Fatigue Management
Geared towards those with dysautonomia side effects (impaired reactions to positional changes) and those with a decreased exercise tolerance, PT's can educate patients on energy conservation techniques to help individuals pace themselves during their activities of daily living.
If you want a quick overview about Ehler Danlos Syndrome, the video below is a great resource and break down of the disorder in more detail than this blog covers!
If you have or know someone who has HSD/EDS and would benefit from our approach, call 757-578-2958 or visit www.restorativetherapyco.com today! One of your physical therapists, Franny, just completed some continuing education at Duke University with Heather Purdin, a leader in the field of examining and treating those with HSD/EDS. Thank you for reading and feel free to share.
Contributed by Frances Rogers, PT, DPT
References:
-Taming the Zebra, Vol. 1 by Patricia J. Stott, Heather Purdin
-Miklovic T, Sieg VC. Ehlers-Danlos Syndrome. [Updated 2023 May 29]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2025 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK549814/
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