OT for Hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorders (HSD)

If you’re seeking occupational therapy for Hypermobile Ehlers-Danlos Syndrome (hEDS) or Hypermobility Spectrum Disorders (HSD), we want you to be as informed as possible so we can truly partner to create the best course of treatment for YOU.

In occupational therapy, we tend to work from “menus” of evidence-based assessments and treatments. This gives us the flexibility to meet the specific needs of each patient. Below, you’ll see the assessment and treatment options your therapist may use, along with the evidence that supports them.

Please note that this page is for educational purposes and should not substitute advice from your medical provider. At the bottom of this page, you’ll find therapists near you who can support you.

A quick note on why to pursue occupational therapy for Hypermobile Ehlers-Danlos Syndrome (hEDS)

Nonpharmacological interventions are the frontline approach for treating Ehlers-Danlos Syndrome. Occupational therapy is cost-effective and safe. Through rehabilitation, patients often experience improvements in their symptoms, which further enhance their level of function and overall quality of life. 

Your multidisciplinary team may include a physician (or several specialists), an occupational therapist, a physical therapist, a nurse, a dietitian, and a psychologist. 

Occupational therapists specialize in providing holistic, personalized treatments that promote overall independence. We employ strategies to optimize function that consider physical, mental, emotional, and spiritual well-being. We’re often called everyday problem-solvers, ready to process the challenges you may not have time for in your other appointments, and we may make you wonder, “Why didn’t I think of that?”  

Therapist-recommended assessments for hEDS/ HSD

As you can see below, an EDS/HSD rehab evaluation can focus on multiple areas. 

In addition to informing treatment at the beginning of your therapy journey, assessments provide a point of comparison to track your progress and response to treatment over time. (Without an accurate and thorough baseline, it can be hard to tell how much the interventions are helping!) As such, your therapist may perform certain assessments at various intervals over the course of therapy.

• Canadian Occupational Performance Measure (COPM) ¹
• Multidimensional Fatigue Inventory ^2,3
• Brief Pain Inventory ^2,3
• Tampa Scale of Kinesiophobia (TSK) ²
• ROM and Manual Muscle Testing ³
• 6-Minute Walk Test (6MWT) ²
• Sleep log ³
• Grip and pinch strength ¹
• Postural alignment (seated, standing) and compensatory patterns ¹
• Beighton Score (if not already assessed/ diagnosed) ¹
• Quality of life measure (such as Rand-36 or WHOqol-bref) ²
• The Spider Questionnaire ⁵
• Upper limb hypermobility assessment tool ⁶

Setting goals for hEDS/HSD rehab

Therapy works best when there is buy-in from the patient. It’s essential to collaborate with your therapist to establish treatment goals that accurately reflect what is truly important to you. Occupational therapy is all about emphasizing your ability to do the things that matter to you. 

Therapy treatment interventions for hEDS/HSD

After a thorough evaluation and goal-setting process, it is time to start making progress. The following are treatment interventions that can be implemented as part of a comprehensive therapy program. 

Possible treatment interventions

• Strengthening (stability, low and slow) ^2,7
• Joint protection ⁸
  • Positioning
  • ADL modification
  • Splinting/ orthotic management ⁹
• Fatigue and energy management ^3,10
  • Pacing
  • Energy conservation
  • Work simplification
• Fine motor skills and hand function ¹¹
  • Handwriting
  • Dressing, buttoning
• Pain education and management ^3,10,12,13
  • Pain neuroscience education
  • Coping skills and flare kit
  • Thought management
  • Distraction
  • Mindfulness
• Sleep education and management ³
  • Sleep hygiene
  • Routines
• Proprioception and body awareness ^14,15,16
• Balance, postural sway ⁴
• Postural alignment ⁸
• Interoception ^17,18,19
• Sensory processing ²⁰
• Ergonomic positioning and work setup
• Work and school exploration, accommodations, and support ^{2, 22}
• Leisure and play pursuits
• Social participation ²³
• Mental health support and coping skills ¹⁰
  • Validation ²⁴
  • Working toward acceptance
• Health management
  • Increasing self-awareness of symptoms ²⁴
  • Pregnancy and post-partum considerations ¹⁰
• Self-advocacy skills ^{10, 25}
• Education ^{10, 26}
  • Condition pathophysiology
  • Exacerbating and relieving factors
  • Management
  • Co-occurring conditions as appropriate
  • How to find and evaluate information related to HSD/hEDS
• Home program ²⁵
  • Increasing motivation, adapting routines, seeing benefit, and partnering with family/others helps increase adherence to exercise ²⁷

Choosing a therapist for EDS rehab

Below, you can find occupational therapy professionals who have tagged “Ehlers-Danlos” as a focus area. 

Although many occupational therapists do not specialize in EDS, their training is sufficient to engage a wide variety of patients in individualized interventions that help improve function, regardless of diagnosis. 

You can further maximize your success and the therapist’s approach by sharing this page with them and referencing the additional continuing education options and resources provided here.

Conclusion

Hopefully, this article has helped you understand what therapy for EDS and HSD rehab entails and whether you are a good candidate! 

This article is regularly updated to reflect the latest research. If you have any research you would like us to consider for our next update, please drop it in the comments! 

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References

Here’s the science backing the assessments and treatment outlined above.

References:

1. Lyon S, Rich E. OT and Ehlers-Danlos Syndrome. OT Potential Podcast | Occupational Therapy CEUs. 2024.
2. Hakimi A, Bergoin C, Mucci P. Immediate and 6-week after effects of a rehabilitation program for Ehlers–Danlos syndrome hypermobile type patients: A retrospective study. American Journal of Medical Genetics Part A. 2020;182(10):2263-2271.
3. Hakimi A, Bergoin C, Mucci P. What are the most important symptoms to assess in hypermobile Ehlers-Danlos syndrome? A questionnaire study based on the Delphi technique. Disability and Rehabilitation. 2022;44(26):8325-8331.
4. Iatridou K, Mandalidis D, Chronopoulos E, Vagenas G, Athanasopoulos S. Static and dynamic body balance following provocation of the visual and vestibular systems in females with and without joint hypermobility syndrome. Journal of Bodywork and Movement Therapies. 2014;18(2):159-164.
5. Ewer ER, De Pauw R, Kazkazk H, et al. The Spider: a visual, multisystemic symptom impact questionnaire for people with hypermobility-related disorders—validation in adults. Clin Rheumatol. 2024;43(9):3005-3017.
6. Nicholson LL, Chan C. The Upper Limb Hypermobility Assessment Tool: A novel validated measure of adult joint mobility. Musculoskeletal Science and Practice. 2018;35:38-45.
7. Scheper M, Rombaut L, de Vries J, et al. The association between muscle strength and activity limitations in patients with the hypermobility type of Ehlers–Danlos syndrome: the impact of proprioception. Disability and Rehabilitation. 2017;39(14):1391-1397.
8. Keer R, Simmonds J. Joint protection and physical rehabilitation of the adult with hypermobility syndrome. Current Opinion in Rheumatology. 2011;23(2):131.
9. Jensen AM, Andersen JQ, Quisth L, Ramstrand N. Finger orthoses for management of joint hypermobility disorders: Relative effects on hand function and cognitive load. Prosthetics and Orthotics International. 2021;45(1):36.
10. Bennett SE, Walsh N, Moss T, Palmer S. Developing a self-management intervention to manage hypermobility spectrum disorders (HSD) and hypermobile Ehlers-Danlos syndrome (hEDS): an analysis informed by behaviour change theory. Disability and Rehabilitation. 2022;44(18).
11. Wesley A, Bray P, Pacey V, Chan C, Nicholson LL. Hand Impairment and Function in Children and Adolescents With Heritable Disorders of Connective Tissue. The American Journal of Occupational Therapy. 2022;76(6):7606205030.
12. Jones JT, Black WR, Cogan W, Callen E. Resource utilization and multidisciplinary care needs for patients with Ehlers–Danlos syndrome. Mol Genet Genomic Med. 2022;10(11):e2057.
13. Chew MT, Ilhan E, Nicholson LL, Kobayashi S, Chan C. An online pain management program for people with hypermobile Ehlers-Danlos Syndrome or hypermobility spectrum disorder: a three-staged development process. Disability and Rehabilitation. 0(0):1-11.
14. Clayton HA, Jones SAH, Henriques DYP. Proprioceptive precision is impaired in Ehlers-Danlos syndrome. Springerplus. 2015;4:323.
15. Ferrell WR, Tennant N, Sturrock RD, et al. Amelioration of symptoms by enhancement of proprioception in patients with joint hypermobility syndrome. Arthritis Rheumatology. 2004;50(10):3323-3328.
16. Smith TO, Jerman E, Easton V, et al. Do people with benign joint hypermobility syndrome (BJHS) have reduced joint proprioception? A systematic review and meta-analysis. Rheumatol Int. 2013;33(11):2709-2716.
17. Di Lernia D, Serino S, Riva G. Pain in the body. Altered interoception in chronic pain conditions: A systematic review. Neuroscience & Biobehavioral Reviews. 2016;71:328-341.
18. Mallorquí-Bagué N, Garfinkel SN, Engels M, et al. Neuroimaging and psychophysiological investigation of the link between anxiety, enhanced affective reactivity and interoception in people with joint hypermobility. Front Psychol. 2014;5.
19. Niermeyer M, Ball D, Green M, et al. Interoceptive attention regulation in Ehlers–Danlos syndromes: associations between pain and psychiatric symptom severity. Transl Behav Med. 2021;11(10):1923-1930.
20. Baeza-Velasco C, Bourdon C, Montalescot L, et al. Low- and high-anxious hypermobile Ehlers-Danlos syndrome patients: comparison of psychosocial and health variables. Rheumatol Int. 2018;38(5):871-878.
21. De Baets S, Calders P, Verhoost L, et al. Patient perspectives on employment participation in the “hypermobile Ehlers–Danlos syndrome.” Disability and Rehabilitation. 2021;43(5):668-677.
22. Hill JC. Zebras in the workplace: Vocational rehabilitation considerations for individuals with Ehlers-Danlos Syndrome. Journal of Vocational Rehabilitation. 2017;47(2):197-206.
23. Baeza-Velasco C, Bourdon C, Montalescot L, et al. Low- and high-anxious hypermobile Ehlers-Danlos syndrome patients: comparison of psychosocial and health variables. Rheumatol Int. 2018;38(5):871-878.
24. Scheierman H. How Illness Hurts: The Impact of Ehlers Danlos Syndrome on Well-Being and Self-Esteem. Doctoral Dissertation. Alliant International University; 2024.
25. Bovet C, Carlson M, Taylor M. Quality of life, unmet needs, and iatrogenic injuries in rehabilitation of patients with Ehlers–Danlos Syndrome hypermobility type/Joint Hypermobility Syndrome. American Journal of Medical Genetics Part A. 2016;170(8):2044-2051.
26. Feldman ECH, Homan KJ, Williams SE, Ting TV, Goldschneider KR, Kashikar-Zuck S. A narrative review of the literature on illness uncertainty in hypermobile ehlers-danlos syndrome: implications for research and clinical practice. Pediatric Rheumatology. 2023;21(1):121.
27. Birt L, Pfeil M, MacGregor A, Armon K, Poland F. Adherence to Home Physiotherapy Treatment in Children and Young People with Joint Hypermobility: A Qualitative Report of Family Perspectives on Acceptability and Efficacy. Musculoskeletal Care. 2014;12(1):56-61.

Additional Resources

• Ehlers-Danlos Society- Occupational Therapy
• Pacing, Exercise, and Managing Daily Activities (YouTube)
• Navigating Education and Work with a Chronic Condition (YouTube)
• School Adaptations and Occupational Therapy (YouTube)
• Instagram: @EmilyRichOT
• Job Accommodations

OT Potential does not endorse any treatments, procedures, products, or therapists referenced herein. This information is provided as an educational service and is not intended to serve as medical advice. Anyone seeking medical advice should consult their medical provider.