{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,31]],"date-time":"2026-10-31T06:33:20Z","timestamp":1793428400318,"version":"4.5.0"},"reference-count":27,"publisher":"Ovid Technologies (Wolters Kluwer Health)","issue":"3","content-domain":{"domain":["lww.com","ovid.com"],"crossmark-restriction":true},"short-container-title":[],"published-print":{"date-parts":[[2026,9]]},"abstract":"<jats:sec>\n                    <jats:title\/>\n                    <jats:p>The diagnosis and management of hypermobility spectrum disorders and hypermobile Ehlers\u2013Danlos syndrome (HSD\/hEDS) are a healthcare challenge because of the wide array of symptoms, lack of diagnostic biomarkers, and evolving management guidelines. This study aimed to describe patient experiences, disability, and self-perceived success managing HSD\/hEDS, with or without comorbid postural orthostatic tachycardia syndrome, mast cell activation syndrome, or hip dysplasia. This anonymous online survey explored symptoms, impact on life\/function, healthcare experiences, and symptom management status of individuals in the US aged greater than or equal to 13 years with HSD\/hEDS. Frequencies and central tendencies were calculated for multiple-choice items. Free-response items were categorized using WHO domains of disability. Seventy-two survey responses were analyzed. The most frequent symptoms were joint hypermobility, joint pain, and subluxations. Disabilities were reported in all six WHO life domains, with life activities being the most common. Most participants (58%) reported symptoms were not well-managed and were more likely to report financial barriers to care and more health conditions compared with other participants. This sample of individuals with HSD\/hEDS experiences complex, multifactorial challenges with disability and symptom management. These challenges may be related to comorbidities and financial barriers. Interdisciplinary care models and targeted rehabilitation approaches may improve participation and outcomes, particularly when combined with strategies to reduce logistical and economic barriers.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1097\/mrr.0000000000000713","type":"journal-article","created":{"date-parts":[[2026,6,16]],"date-time":"2026-06-16T07:00:08Z","timestamp":1781593208000},"page":"222-228","update-policy":"https:\/\/doi.org\/10.1097\/lww.0000000000001000","source":"Crossref","is-referenced-by-count":0,"title":["Hypermobility spectrum disorders and hypermobile Ehlers\u2013Danlos syndrome: patient experiences, disability and implications for rehabilitation"],"prefix":"10.1097","volume":"49","author":[{"given":"Lindsay","family":"Brandt","sequence":"first","affiliation":[{"name":"Oakland University School of Health Sciences, Physical Therapy Program, Rochester, Michigan, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Melodie","family":"Kondratek","sequence":"additional","affiliation":[{"name":"Oakland University School of Health Sciences, Physical Therapy Program, Rochester, Michigan, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Limmy","family":"Kim","sequence":"additional","affiliation":[{"name":"Oakland University School of Health Sciences, Physical Therapy Program, Rochester, Michigan, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hailey","family":"Ohanian","sequence":"additional","affiliation":[{"name":"Oakland University School of Health Sciences, Physical Therapy Program, Rochester, Michigan, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kiley","family":"Schneck","sequence":"additional","affiliation":[{"name":"Oakland University School of Health Sciences, Physical Therapy Program, Rochester, Michigan, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Corinne","family":"Vukasovich","sequence":"additional","affiliation":[{"name":"Oakland University School of Health Sciences, Physical Therapy Program, Rochester, Michigan, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Abigail","family":"Wozny","sequence":"additional","affiliation":[{"name":"Oakland University School of Health Sciences, Physical Therapy Program, Rochester, Michigan, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christina","family":"Ziskey","sequence":"additional","affiliation":[{"name":"Oakland University School of Health Sciences, Physical Therapy Program, Rochester, Michigan, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"276","published-online":{"date-parts":[[2026,7,28]]},"reference":[{"key":"R1-20261031","doi-asserted-by":"crossref","first-page":"148","DOI":"10.1002\/ajmg.c.31539","article-title":"A framework for the classification of joint hypermobility and related conditions.","volume":"175","author":"Castori","year":"2017","journal-title":"Am J Med Genet C Semin Med Genet"},{"key":"R3-20261031","doi-asserted-by":"crossref","first-page":"3549","DOI":"10.1080\/09638288.2022.2131003","article-title":"Patient experience of chronic illness care and complementary integrative health use: a cross-sectional study of patients with hypermobility spectrum disorders (HSD) and Ehlers\u2013Danlos syndromes (EDS).","volume":"45","author":"Guedry","year":"2023","journal-title":"Disabil Rehabil"},{"key":"R4-20261031","doi-asserted-by":"crossref","first-page":"838","DOI":"10.3122\/jabfm.2021.04.200374","article-title":"Diagnosis and management of hypermobility spectrum disorders in primary care.","volume":"34","author":"Atwell","year":"2021","journal-title":"J Am Board Fam Med"},{"key":"R5-20261031","doi-asserted-by":"crossref","first-page":"1339","DOI":"10.3109\/09638280903514739","article-title":"Musculoskeletal complaints, physical activity and health-related quality of life among patients with the Ehlers-Danlos syndrome hypermobility type.","volume":"32","author":"Rombaut","year":"2010","journal-title":"Disabil Rehabil"},{"key":"R6-20261031","doi-asserted-by":"crossref","first-page":"158","DOI":"10.1002\/ajmg.c.31545","article-title":"The evidence\u2010based rationale for physical therapy treatment of children, adolescents, and adults diagnosed with joint hypermobility syndrome\/hypermobile Ehlers-Danlos syndrome.","volume":"175","author":"Engelbert","year":"2017","journal-title":"Am J Med Genet Part C Semin Med Genet"},{"key":"R7-20261031","doi-asserted-by":"crossref","first-page":"e2057","DOI":"10.1002\/mgg3.2057","article-title":"Resource utilization and multidisciplinary care needs for patients with Ehlers-Danlos syndrome.","volume":"10","author":"Jones","year":"2022","journal-title":"Mol Genet Genomic Med"},{"key":"R8-20261031","doi-asserted-by":"crossref","first-page":"2893","DOI":"10.2147\/JPR.S377790","article-title":"Multidisciplinary approach to treating chronic pain in patients with Ehlers-Danlos syndrome: critically appraised topic.","volume":"15","author":"Whalen","year":"2022","journal-title":"J Pain Res"},{"key":"R9-20261031","doi-asserted-by":"crossref","first-page":"212","DOI":"10.1002\/ajmg.c.31554","article-title":"Pain management in the Ehlers\u2013Danlos syndromes.","volume":"175","author":"Chopra","year":"2017","journal-title":"American J of Med Genetics Pt C"},{"key":"R10-20261031","doi-asserted-by":"crossref","first-page":"731","DOI":"10.1080\/09638288.2023.2176554","article-title":"Healthcare experiences among adults with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorder in the United States.","volume":"46","author":"Estrella","year":"2024","journal-title":"Disabil Rehabil"},{"key":"R11-20261031","doi-asserted-by":"crossref","first-page":"253","DOI":"10.1080\/07380577.2021.1975200","article-title":"Occupational therapy interventions for clients with Ehlers-Danlos syndrome (EDS) in the presence of postural orthostatic tachycardia syndrome (POTS).","volume":"36","author":"Levine","year":"2022","journal-title":"Occup Ther Health Care"},{"key":"R12-20261031","doi-asserted-by":"crossref","first-page":"497","DOI":"10.1016\/j.iac.2018.04.004","article-title":"Association of postural tachycardia syndrome and Ehlers-Danlos syndrome with mast cell activation disorders.","volume":"38","author":"Bonamichi-Santos","year":"2018","journal-title":"Immunol Allergy Clin North Am"},{"key":"R13-20261031","doi-asserted-by":"crossref","first-page":"518","DOI":"10.1177\/1941738115587270","article-title":"Current concepts in hip preservation surgery: part I.","volume":"7","author":"Adler","year":"2015","journal-title":"Sports Health"},{"key":"R14-20261031","doi-asserted-by":"crossref","first-page":"719","DOI":"10.1016\/j.anai.2020.08.015","article-title":"Cosegregation of postural orthostatic tachycardia syndrome, hypermobile Ehlers-Danlos syndrome, and mast cell activation syndrome.","volume":"125","author":"Vadas","year":"2020","journal-title":"Ann Allergy Asthma Immunol"},{"key":"R15-20261031","doi-asserted-by":"crossref","first-page":"273","DOI":"10.1007\/s12016-019-08755-8","article-title":"The relationship between hypermobile Ehlers-Danlos syndrome (hEDS), postural orthostatic tachycardia syndrome (POTS), and mast cell activation syndrome (MCAS).","volume":"58","author":"Kohn","year":"2020","journal-title":"Clinic Rev Allerg Immunol"},{"key":"R16-20261031","doi-asserted-by":"crossref","first-page":"27","DOI":"10.2106\/JBJS.20.00060","article-title":"Hypermobility assessment in 1,004 adult patients presenting with hip pain: correlation with diagnoses and demographics.","volume":"102","author":"Santore","year":"2020","journal-title":"J Bone Joint Surg Am"},{"key":"R17-20261031","doi-asserted-by":"crossref","first-page":"1895","DOI":"10.2106\/JBJS.23.01030","article-title":"Generalized joint hypermobility is associated with type-a hip dysplasia in patients undergoing periacetabular osteotomy.","volume":"106","author":"Ping","year":"2024","journal-title":"J Bone Joint Surg Am"},{"key":"R18-20261031","doi-asserted-by":"crossref","first-page":"6425","DOI":"10.3390\/ijerph17176425","article-title":"Psychosocial influence of Ehlers\u2013Danlos syndrome in daily life of patients: a qualitative study.","volume":"17","author":"Palomo-Toucedo","year":"2020","journal-title":"Int J Environ Res Public Health"},{"key":"R19-20261031","doi-asserted-by":"crossref","first-page":"2174","DOI":"10.1016\/j.apmr.2016.02.015","article-title":"Disability in adolescents and adults diagnosed with hypermobility-related disorders: a meta-analysis.","volume":"97","author":"Scheper","year":"2016","journal-title":"Arch Phys Med Rehabil"},{"key":"R21-20261031","doi-asserted-by":"crossref","first-page":"262","DOI":"10.2519\/jospt.2022.10727","article-title":"Measurement properties of the patient-specific functional scale and its current uses: an updated systematic review of 57 studies using Cosmin guidelines.","volume":"52","author":"Pathak","year":"2022","journal-title":"J Orthop Sports Phys Ther"},{"key":"R22-20261031","doi-asserted-by":"crossref","first-page":"429","DOI":"10.1002\/ajmg.c.31950","article-title":"Pain in the Ehlers-Danlos syndromes: mechanisms, models, and challenges.","volume":"187","author":"Malfait","year":"2021","journal-title":"Am J Med Genet C Semin Med Genet"},{"key":"R23-20261031","doi-asserted-by":"crossref","first-page":"e13411","DOI":"10.1111\/papr.13411","article-title":"Evidence for central sensitization as classified by the central sensitization inventory in patients with pain and hypermobility.","volume":"25","author":"Desai","year":"2025","journal-title":"Pain Pract"},{"key":"R24-20261031","doi-asserted-by":"crossref","first-page":"1936","DOI":"10.1080\/09638288.2023.2216028","article-title":"Physical therapy interventions in generalized hypermobility spectrum disorder and hypermobile Ehlers-Danlos syndrome: a scoping review.","volume":"46","author":"Garreth Brittain","year":"2024","journal-title":"Disabil Rehabil"},{"key":"R25-20261031","doi-asserted-by":"crossref","first-page":"769792","DOI":"10.3389\/fresc.2021.769792","article-title":"The GoodHope exercise and rehabilitation (gear) program for people with Ehlers-Danlos syndromes and generalized hypermobility spectrum disorders.","volume":"2","author":"Mittal","year":"2021","journal-title":"Front Rehabil Sci"},{"key":"R26-20261031","first-page":"100366","article-title":"Adaptive approaches to exercise rehabilitation for postural tachycardia syndrome and related autonomic disorders.","volume":"6","author":"Ziaks","year":"2024","journal-title":"Arch Rehabil Res Clin Transl"},{"key":"R27-20261031","doi-asserted-by":"crossref","first-page":"1567708","DOI":"10.3389\/fneur.2025.1567708","article-title":"Impact of exercise to treat postural orthostatic tachycardia syndrome: a systematic review.","volume":"16","author":"Cortez","year":"2025","journal-title":"Front Neurol"},{"key":"R28-20261031","doi-asserted-by":"crossref","first-page":"357","DOI":"10.1186\/s13023-021-01962-7","article-title":"The GoodHope Ehlers Danlos Syndrome Clinic: development and implementation of the first interdisciplinary program for multi-system issues in connective tissue disorders at the Toronto General Hospital.","volume":"16","author":"Mittal","year":"2021","journal-title":"Orphanet J Rare Dis"},{"key":"R29-20261031","doi-asserted-by":"crossref","first-page":"3951","DOI":"10.1007\/s10067-024-07172-3","article-title":"Defining a core outcome set for hypermobility spectrum disorders and hypermobile Ehlers-Danlos syndrome: a Delphi consensus study.","volume":"43","author":"Clark","year":"2024","journal-title":"Clin Rheumatol"}],"container-title":["International Journal of Rehabilitation Research"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.ovid.com\/10.1097\/MRR.0000000000000713","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,10,31]],"date-time":"2026-10-31T06:00:14Z","timestamp":1793426414000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.ovid.com\/10.1097\/MRR.0000000000000713"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,7,28]]},"references-count":27,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2026]]}},"URL":"https:\/\/doi.org\/10.1097\/mrr.0000000000000713","relation":{},"ISSN":["0342-5282","1473-5660"],"issn-type":[{"value":"0342-5282","type":"print"},{"value":"1473-5660","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,7,28]]},"assertion":[{"value":"2026-04-23","name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2026-06-02","name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}}]}}