Physical Activity, Rehabilitation and Health Education in High-Risk Patients: Lessons from Vascular Ehlers–Danlos Syndrome
DOI:
https://doi.org/10.12775/QS.2026.54.70875Keywords
physical activity, exercise safety, rehabilitation, patient education, vascular ehlers–danlos syndromeAbstract
Background. Physical activity is a fundamental component of health, prevention, and education; however, in selected high-risk populations, safe exercise prescription remains a major challenge. Vascular Ehlers–Danlos syndrome (vEDS) represents an extreme model of exercise-related risk due to marked vascular fragility.
Aim. The aim of this study was to analyse the safety of physical activity in vEDS and to provide practical implications for sport participation, rehabilitation, and health education.
Material and methods. A narrative review of available literature was performed, focusing on exercise- and sport-related complications, rehabilitation practices, and current recommendations for physical activity in patients with vEDS.
Results. Analysis of reported cases shows that both competitive sports and low-intensity activities, including standard rehabilitation exercises, may trigger severe and potentially fatal vascular events. At the same time, appropriate low-load, supervised physical activity may support functional capacity and quality of life. Current recommendations are inconsistent and largely based on expert opinion, leading to uncertainty among patients and professionals responsible for exercise guidance.
Conclusions. The findings highlight the need for a structured, education-based approach to physical activity in high-risk populations. In vEDS, exercise prescription should prioritise safety, individualisation, and professional supervision. The development of clear guidelines and improved education of clinicians, physiotherapists, and sport practitioners is essential to ensure safe participation in physical activity while minimising the risk of serious complications.
References
[1] Ritelli, M., & Colombi, M. (2020). Molecular genetics and pathogenesis of Ehlers–Danlos syndrome and related connective tissue disorders. Genes, 11(5), 547. https://doi.org/10.3390/genes11050547
[2] Miklovic, T., & Sieg, V. C. (2023). Ehlers–Danlos syndrome. In StatPearls [Internet]. StatPearls Publishing. NCBI Bookshelf. https://www.ncbi.nlm.nih.gov/books/NBK549814/
[3] Malfait, F., Francomano, C., Byers, P., Belmont, J., Berglund, B., Black, J., Bloom, L., Bowen, J. M., Brady, A. F., Burrows, N. P., Castori, M., Cohen, H., Colombi, M., Demirdas, S., De Backer, J., De Paepe, A., Fournel-Gigleux, S., Frank, M., Ghali, N., Giunta, C., Grahame, R., Hakim, A., Jeunemaitre, X., Johnson, D., Juul-Kristensen, B., Kapferer-Seebacher, I., Kazkaz, H., Kosho, T., Lavallee, M. E., Levy, H., Mendoza-Londono, R., Pepin, M., Pope, F. M., Reinstein, E., Robert, L., Rohrbach, M., Sanders, L., Sobey, G. J., Van Damme, T., Vandersteen, A., Van Mourik, C., Voermans, N., Wheeldon, N., Zschocke, J., & Tinkle, B. (2017). The 2017 international classification of the Ehlers–Danlos syndromes. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 175(1), 8–26. https://doi.org/10.1002/ajmg.c.31552
[4] Endo, T., Takayama, T., Suhara, M., Mochizuki, Y., Taniguchi, R., & Hoshina, K. (2023). A case of popliteal artery rupture in an 11-year-old patient with vascular Ehlers–Danlos syndrome. Journal of Vascular Surgery Cases, Innovations and Techniques, 9, 101129. https://doi.org/10.1016/j.jvscit.2023.101129
[5] Omar, R., Malfait, F., & Van Agtmael, T. (2021). Four decades in the making: Collagen III and mechanisms of vascular Ehlers–Danlos syndrome. Matrix Biology Plus, 12, 100090. https://doi.org/10.1016/j.mbplus.2021.100090
[6] Awad, A. A., Yappalparvi, A., Khatib, M. N., Srivastava, M., Kaur, M., Barwal, A., … & Prasoon, A. (2025). Prevalence of vascular complications in Ehlers-Danlos syndrome: a systematic review and meta-analysis. Orphanet Journal of Rare Diseases, 20, Article 312. https://doi.org/10.1186/s13023-025-03854-6
[7] Oderich, G. S., Panneton, J. M., Bower, T. C., Lindor, N. M., Cherry, K. J., Noel, A. A., Kalra, M., Sullivan, T., & Gloviczki, P. (2005). The spectrum, management and clinical outcome of Ehlers–Danlos syndrome type IV: A 30-year experience. Journal of Vascular Surgery, 42(1), 98–106. https://doi.org/10.1016/j.jvs.2005.03.053
[8] Kalia, R., Kalia, R., Cubelo, M., Musih, J., & Popat, J. (2022). Clinically suspected exercise-induced myocarditis in a patient with vascular Ehlers–Danlos syndrome. Cureus, 14(9), e29689. https://doi.org/10.7759/cureus.29689
[9] Mankad, K., & Puppala, S. (2011). Severe vascular complication after an arm stretch in a child with Ehlers-Danlos syndrome. Journal of Clinical Rheumatology, 17(4), 223. https://doi.org/10.1097/RHU.0b013e31821d06bf
[10] Buettner, D., & Fortier, S. H. (2009). Ehlers-Danlos syndrome in trauma: a case review. Journal of Emergency Nursing, 35(2), 169–170. https://doi.org/10.1016/j.jen.2008.11.003
[11] Rossi, P. I., Scher, L. A., Friedman, S. G., Hall, M. H., Boxer, R. A., & Bialer, M. G. (1998). Subclavian artery pseudoaneurysm in type IV Ehlers-Danlos syndrome. Journal of vascular surgery, 27(3), 549–551. https://doi.org/10.1016/s0741-5214(98)70331-3
[12] Wimmer, P. J., Howes, D. S., Rumoro, D. P., & Carbone, M. (1996). Fatal vascular catastrophe in Ehlers-Danlos syndrome: a case report and review. The Journal of emergency medicine, 14(1), 25–31. https://doi.org/10.1016/0736-4679(95)02039-x
[13] Izumi, R., Hayashi, K., Sato, M., Yamaguchi, T., Suzuki, A., Nakaya, Y., Ikeda, K., Ikawa, M., & Kobayashi, Y. (2025). Intramuscular hemorrhage during rehabilitation in a post-stroke patient with vascular Ehlers–Danlos syndrome: A case report and review of spasticity-related muscle injury. Frontiers in Rehabilitation Sciences, 6. https://doi.org/10.3389/fresc.2025.163865
[14] Demirdas, S., van den Bersselaar, L. M., Lechner, R., Bos, J., Alsters, S. I. M., Baars, M. J. H., Baas, A. F., Baysal, Ö., van der Crabben, S. N., Dulfer, E., Giesbertz, N. A. A., Helderman-van den Enden, A. T. J. M., Hilhorst-Hofstee, Y., Kempers, M. J. E., Komdeur, F. L., Loeys, B., Majoor-Krakauer, D., Ockeloen, C. W., Overwater, E., van Tintelen, P. J., … Houweling, A. C. (2024). Vascular Ehlers-Danlos Syndrome: A Comprehensive Natural History Study in a Dutch National Cohort of 142 Patients. Circulation. Genomic and precision medicine, 17(3), e003978. https://doi.org/10.1161/CIRCGEN.122.003978
[15] Byers, P. H., Belmont, J., Black, J., De Backer, J., Frank, M., Jeunemaitre, X., Johnson, D., Pepin, M., Robert, L., Sanders, L., & Wheeldon, N. (2017). Diagnosis, natural history, and management in vascular Ehlers-Danlos syndrome. American journal of medical genetics. Part C, Seminars in medical genetics, 175(1), 40–47. https://doi.org/10.1002/ajmg.c.31553
[16] Bowen, J. M., Hernandez, M., Johnson, D. S., Green, C., Kammin, T., Baker, D., Keigwin, S., Makino, S., Taylor, N., Watson, O., Wheeldon, N. M., & Sobey, G. J. (2023). Diagnosis and management of vascular Ehlers-Danlos syndrome: Experience of the UK national diagnostic service, Sheffield. European journal of human genetics : EJHG, 31(7), 749–760. https://doi.org/10.1038/s41431-023-01343-7
[17] Johansen, H., Velvin, G., & Lidal, I. B. (2022). Pain and fatigue in adults with Loeys-Dietz syndrome and vascular Ehlers-Danlos syndrome, a questionnaire-based study. American journal of medical genetics. Part A, 188(9), 2605–2616. https://doi.org/10.1002/ajmg.a.62858
[18] Velvin, G., Johansen, H., & Bostrøm, K. (2025). Exploring patient experiences of pain fatigue and physical activity in syndromic heritable thoracic aortic disease using mixed methods. Scientific reports, 15(1), 31320. https://doi.org/10.1038/s41598-025-16184-1
[19] Velvin, G., Johansen, H., Vardeberg, K., Sjögren Fugl-Meyer, K., Wilhelmsen, J. E., & Lidal, I. (2021). Physical exercise for people with hereditable thoracic aortic disease. A study of patient perspectives. Disability and rehabilitation, 43(17), 2464–2471. https://doi.org/10.1080/09638288.2019.1703145
[20] VASCERN — European Reference Network on Rare Multisystemic Vascular Diseases. (2022). vEDS Do’s and Don’ts factsheet: Clinical recommendations for vascular Ehlers–Danlos syndrome (Version 2) [PDF]. https://ehlers-danlos.nl/wp-content/uploads/2022/06/Vascern-guidelines-vEDS.pdf
[21] Johansen, H., Velvin, G., & Lidal, I. (2022). Adults with Loeys-Dietz syndrome and vascular Ehlers-Danlos syndrome: a cross-sectional study of patient experiences with physical activity. Disability and rehabilitation, 44(10), 1968–1975. https://doi.org/10.1080/09638288.2020.1815874
Downloads
Published
How to Cite
Issue
Section
License
Copyright (c) 2026 Kamila Ryszkowska, Kinga Krzyżowska , Jagienka Perzyńska, Natalia Pawelec, Jaśmina Podkościelna, Weronika Bagińska, Urszula Załuska, Aleksandra Purska, Jakub Grabiński
This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License.
Stats
Number of views and downloads: 57
Number of citations: 0
