Rehabilitation and Physical Activity in Ehlers-Danlos Syndrome: A Review of Interventions and Outcomes
DOI:
https://doi.org/10.12775/QS.2025.41.60105Keywords
physical activity, joint hypermobility, hypermobile Ehlers-Danlos syndrome, rehabilitation, exerciseAbstract
Purpose of Research:
This study aims to explore the impact of physical activity on the quality of life of individuals with Ehlers-Danlos Syndrome (EDS), a group of disorders affecting connective tissues. The focus is on understanding how tailored exercise programs can improve symptoms and overall well-being across different EDS subtypes.
Research Materials and Methods:
A PubMed review identified studies on Ehlers-Danlos syndrome, quality of life, and exercise. Relevant peer-reviewed research from the last 20 years was included, screened, and synthesized.
Basic Results:
The findings indicate that physical activity plays a crucial role in improving the quality of life for individuals with EDS. Tailored exercise programs, including proprioceptive and stabilization exercises, have been shown to reduce pain and enhance functional capacity. Additionally, interdisciplinary approaches combining physical therapy with cognitive-behavioral strategies can mitigate psychological factors such as anxiety and depression, which are prevalent among EDS patients. Studies highlight the importance of adapting exercises to individual needs to avoid exacerbating symptoms like joint instability and chronic pain.
Conclusions:
In conclusion, physical activity is a vital component of EDS management, offering benefits in pain reduction, improved joint function, and enhanced quality of life. However, further research is necessary to determine the optimal exercise strategies for different EDS subtypes and to address the limitations of current studies, which often suffer from small sample sizes and heterogeneity in interventions. Developing personalized treatment plans that integrate physical therapy with psychological support can significantly improve patient outcomes and should be a priority in future studies. Additionally, there is a need to explore the effectiveness of interventions in pediatric and adolescent populations with EDS.
References
1. Miklovic T, Sieg VC. Ehlers-Danlos Syndrome. Neurocutaneous Disorders: A Clinical, Diagnostic and Therapeutic Approach: Third Edition [Internet]. 2023 May 29 [cited 2024 Dec 17];393–9. Available from: https://www.ncbi.nlm.nih.gov/books/NBK549814/
2. Malfait F. Vascular aspects of the Ehlers-Danlos Syndromes. Matrix Biol [Internet]. 2018 Oct 1 [cited 2024 Dec 17];71–72:380–95. Available from: https://pubmed.ncbi.nlm.nih.gov/29709596/
3. Van Dijk FS, Ghali N, Chandratheva A. Ehlers-Danlos syndromes: importance of defining the type. Pract Neurol [Internet]. 2024 Dec 30 [cited 2024 Dec 17];24(2):90–7. Available from: https://pubmed.ncbi.nlm.nih.gov/38160052/
4. Malfait F, Castori M, Francomano CA, Giunta C, Kosho T, Byers PH. The Ehlers-Danlos syndromes. Nat Rev Dis Primers [Internet]. 2020 Dec 1 [cited 2024 Dec 17];6(1). Available from: https://pubmed.ncbi.nlm.nih.gov/32732924/
5. Ehlers-Danlos syndromes - NHS [Internet]. 2024 [cited 2025 Mar 4]. Available from: https://www.nhs.uk/conditions/ehlers-danlos-syndromes/
6. Gregg CD, McIntosh G, Hall H, Watson H, Williams D, Hoffman CW. The relationship between the Tampa Scale of Kinesiophobia and low back pain rehabilitation outcomes. Spine J [Internet]. 2015 Dec 1 [cited 2025 Mar 4];15(12):2466–71. Available from: https://pubmed.ncbi.nlm.nih.gov/26282104/
7. Grahame R. Joint hypermobility syndrome pain. Curr Pain Headache Rep [Internet]. 2009 Dec [cited 2025 Mar 4];13(6):427–33. Available from: https://pubmed.ncbi.nlm.nih.gov/19889283/
8. Celletti C, Castori M, La Torre G, Camerota F. Evaluation of kinesiophobia and its correlations with pain and fatigue in joint hypermobility syndrome/Ehlers-Danlos syndrome hypermobility type. Biomed Res Int [Internet]. 2013 [cited 2025 Mar 4];2013. Available from: https://pubmed.ncbi.nlm.nih.gov/23936820/
9. Rombaut L, Malfait F, Cools A, De Paepe A, Calders P. Musculoskeletal complaints, physical activity and health-related quality of life among patients with the Ehlers-Danlos syndrome hypermobility type. Disabil Rehabil [Internet]. 2010 [cited 2024 Dec 17];32(16):1339–45. Available from: https://pubmed.ncbi.nlm.nih.gov/20156051/
10. Rombaut L, Malfait F, De Wandele I, Cools A, Thijs Y, De Paepe A, et al. Medication, surgery, and physiotherapy among patients with the hypermobility type of ehlers-danlos syndrome. Arch Phys Med Rehabil [Internet]. 2011 Jul 1 [cited 2024 Dec 17];92(7):1106–12. Available from: http://www.archives-pmr.org/article/S0003999311000645/fulltext
11. Higo A, Palmer S, Liaghat B, Tallis J, Silvester L, Pearce G. The Effectiveness of Conservative Interventions on Pain, Function, and Quality of Life in Adults with Hypermobile Ehlers-Danlos Syndrome/Hypermobility Spectrum Disorders and Shoulder Symptoms: A Systematic Review. Arch Rehabil Res Clin Transl [Internet]. 2024 Sep 1 [cited 2024 Dec 17];6(3). Available from: https://pubmed.ncbi.nlm.nih.gov/39372240/
12. Susanne L, Lisbeth C. Wrist Stabilising Exercise Versus Hand Orthotic Intervention for Persons with Hypermobility – A Randomised Clinical Trial. Clin Rehabil [Internet]. 2024 Oct 29 [cited 2024 Dec 17]; Available from: https://journals.sagepub.com/doi/full/10.1177/02692155241293265?rfr_dat=cr_pub++0pubmed&url_ver=Z39.88-2003&rfr_id=ori%3Arid%3Acrossref.org
13. Peebles KC, Jacobs C, Makaroff L, Pacey V. The use and effectiveness of exercise for managing postural orthostatic tachycardia syndrome in young adults with joint hypermobility and related conditions: A scoping review. Auton Neurosci [Internet]. 2024 Apr 1 [cited 2024 Dec 17];252. Available from: http://www.autonomicneuroscience.com/article/S1566070224000109/fulltext
14. Reychler G, De Backer MM, Piraux E, Poncin W, Caty G. Physical therapy treatment of hypermobile Ehlers-Danlos syndrome: A systematic review. Am J Med Genet A [Internet]. 2021 Oct 1 [cited 2024 Dec 17];185(10):2986–94. Available from: https://pubmed.ncbi.nlm.nih.gov/34145717/
15. Börsch N, Mücke M, Maier A, Conrad R, Pantel JT, Sellin J, et al. Treating pain in patients with Ehlers-Danlos syndrome : Multidisciplinary management of a multisystemic disease. Schmerz [Internet]. 2024 Feb 1 [cited 2024 Dec 17];38(1):12–8. Available from: https://pubmed.ncbi.nlm.nih.gov/38189943/
16. Spanhove V, De Wandele I, Malfait F, Calders P, Cools A. Home-based exercise therapy for treating shoulder instability in patients with hypermobile Ehlers-Danlos syndrome/hypermobility spectrum disorders. A randomized trial. Disabil Rehabil [Internet]. 2023 [cited 2024 Dec 17];45(11):1811–21. Available from: https://www.tandfonline.com/doi/abs/10.1080/09638288.2022.2076932
17. Peterson B, Coda A, Pacey V, Hawke F. Physical and mechanical therapies for lower limb symptoms in children with Hypermobility Spectrum Disorder and Hypermobile Ehlers-Danlos Syndrome: a systematic review. J Foot Ankle Res [Internet]. 2018 Nov 7 [cited 2024 Dec 17];11(1). Available from: https://pubmed.ncbi.nlm.nih.gov/30455744/
18. Hakimi A, Bergoin C, De Jesus A, Hoorelbeke A, Ramon P, Florea O, et al. Multiple Sustainable Benefits of a Rehabilitation Program in Therapeutic Management of Hypermobile Ehlers-Danlos Syndrome: A Prospective and Controlled Study at Short- and Medium-Term. Arch Phys Med Rehabil [Internet]. 2023 Dec 1 [cited 2024 Dec 17];104(12):2059–66. Available from: https://pubmed.ncbi.nlm.nih.gov/37406924/
19. Zabriskie HA. Rationale and Feasibility of Resistance Training in hEDS/HSD: A Narrative Review. J Funct Morphol Kinesiol [Internet]. 2022 Sep 1 [cited 2024 Dec 17];7(3). Available from: https://pubmed.ncbi.nlm.nih.gov/35997377/
20. Buryk-Iggers S, Mittal N, Santa Mina D, Adams SC, Englesakis M, Rachinsky M, et al. Exercise and Rehabilitation in People With Ehlers-Danlos Syndrome: A Systematic Review. Arch Rehabil Res Clin Transl [Internet]. 2022 Jun 1 [cited 2024 Dec 17];4(2):100189. Available from: https://pmc.ncbi.nlm.nih.gov/articles/PMC9214343/
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