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The content of this website makes reference to many scientific and medical resources. This page provides a list of the key references used:
Site statistics
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| 15 Years – Average time to get a hEDS or EDS diagnosis in Australia | Trudgian, R., & Flood, T. (2024). An exploration of the journey to diagnosis of Ehlers-Danlos Syndrome (EDS) for women living in Australia: A pilot study. PLOS ONE, 19(2), e0307574. https://doi.org/10.1371/journal.pone.0307574 |
| 75% – Percentage of patients with EDS who believe they have been misdiagnosed | Trudgian, R., & Flood, T. (2024). An exploration of the journey to diagnosis of Ehlers-Danlos Syndrome (EDS) for women living in Australia: A pilot study. PLOS ONE, 19(2), e0307574. https://doi.org/10.1371/journal.pone.0307574 |
| Up to 88% – Percentage of patients with Fibromyalgia who also have hEDS or EDS | Alsiri, N., Alhadhoud, M., Alkatefi, T., & Palmer, S. (2023). The concomitant diagnosis of fibromyalgia and connective tissue disorders: A systematic review. Seminars in Arthritis and Rheumatism, 58, 152127. https://doi.org/10.1016/j.semarthrit.2022.152127 Kozanoğlu E, Benlidayı IC, Akilli RE, Taşal A. Is there any link between joint hypermobility and mitral valve prolapse in patients with fibromyalgia syndrome? Clin Rheumatol. 2016;35(4):1041-1044. https://doi.org/10.1007/s10067-015-3024-9 |
| 3 years – Average waiting list to see a HSD, hEDS or EDS specialist in Australia | Calculated from anecdotal data from Australian-based hypermobility professionals and specialists known to Hypermobility Health Connect™ |
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| 1 in 5 Australians over the age of 45 complain of chronic pain (a major symptom of EDS, hEDS & HSD) | Australian Institute of Health and Welfare. (2016). Chronic pain in Australia: A review of prevalence, patterns, and management. AIHW. Retrieved from https://www.aihw.gov.au |
| Up to 90% of HSD, hEDS and EDS patients present to GPs and physios with pain as their first symptom | Rombaut, L., Malfait, F., De Wandele, I., Cools, A., Thijs, Y., De Paepe, A., & Calders, P. (2017). Chronic pain in patients with Ehlers-Danlos Syndrome: An international survey study. The American Journal of Medicine, 130(5), 619.e9–619.e15. https://doi.org/10.1016/j.amjmed.2017.02.013 |
| Up to 46% of children with EDS and HSD are also diagnosed with ADHD | Erik Kindgren, Antonia Quiñones Perez and Rajna Knez. Prevalence of ADHD and Autism Spectrum Disorder in Children with Hypermobility Spectrum Disorders or Hypermobile Ehlers-Danlos Syndrome: A Retrospective Study. Neuropsychiatr Dis Treat. 2021. Vol. 17:379-388. https://doi.org/10.2147/NDT.S290494 |
| More than 50% of patients with EDS and hEDS report clinician-related patient traumatisation and up to 90 % felt invalidated by their clinicians | Halverson, C. M. (2023). Clinician-associated traumatization from difficult medical encounters: Results from a qualitative interview study on the Ehlers-Danlos Syndromes. The Journal of the Academy of Consultation-Liaison Psychiatry, 64(4), 417-428. https://doi.org/10.1016/j.jaclp.2023.06.008 |
| More than 50% of patients with Autism Spectrum also are hypermobile | Baeza-Velasco, C., Billon, G., Gély-Nargeot, M.-C., & Hamonet, C. (2022). Neurodevelopmental manifestations and psychiatric vulnerability in Ehlers-Danlos syndromes and hypermobility spectrum disorders. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 190(1), 78–88. https://doi.org/10.1002/ajmg.c.31955 |
| EDS, hEDS, and HSD disproportionately impact females, with 80-90% of cases occurring in women | Demmler, J. C., Atkinson, M. D., Reinhold, E. J., Callard, F., & McAllister, K. (2019). Diagnosed prevalence of Ehlers-Danlos syndrome and hypermobility spectrum disorder in Wales, UK: A national electronic cohort study and case-control comparison. BMJ Open, 9(11), e031365. https://doi.org/10.1136/bmjopen-2019-031365 Castori, M., Morlino, S., Celletti, C., Celli, M., Morrone, A., Camerota, F., & Grammatico, P. (2012). Management of pain and fatigue in the joint hypermobility syndrome (a.k.a. Ehlers-Danlos syndrome hypermobility type): Principles and proposals for a multidisciplinary approach. American Journal of Medical Genetics Part A, 158A(8), 2055-2070. https://doi.org/10.1002/ajmg.a.35483 |
| 57% of patients with chronic pain in Australia rely on pain medications/analgesics | Australian Institute of Health and Welfare. (2016). Chronic pain in Australia: A review of prevalence, patterns, and management. AIHW. Retrieved from https://www.aihw.gov.au |
General references
(AIHW, 2020, Chronic pain in Australia -Report on Pain) Chronic pain in Australia, Summary – Australian Institute of Health and Welfare
Alsiri, N., Alhadhoud, M., Alkatefi, T., & Palmer, S. (2023). The concomitant diagnosis of fibromyalgia and connective tissue disorders: A systematic review. Seminars in arthritis and rheumatism, 58, 152127-152127. https://doi.org/10.1016/j.semarthrit.2022.152127
American Academy of Family Physicians. (2021). Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders. American Family Physician, 103(8), online Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders | AAFP
Arbuck DM. A fresh look at opioid antagonists in chronic pain management. Practical Pain Management. 2018;17(8).
Arch, J. J., & Craske, M. G. (2008). Acceptance and commitment therapy and cognitive behavioral therapy for anxiety disorders: Different treatments, similar mechanisms? Clinical Psychology: Science and Practice, 15(4), 263–279.
Australian Institute of Health and Welfare. (2023). Health system spending on disease and injury in Australia, 2020-21. Retrieved from https://www.aihw.gov.au/reports/health-welfare-expenditure/health-system-spending-on-disease-and-injury-in-au
Australian POTS Foundation. (2022). Dr Fraser Burling, POTS Unmasked 2022. Retrieved from https://potsfoundation.org.au/dr-fraser-burling-pots-unmasked-2022/
Baeza-Velasco C, Sinibaldi L, Castori M. Attention-deficit/hyperactivity disorder, joint hypermobility-related disorders and pain: expanding body-mind connections to the developmental age. Atten Defic Hyperact Disord. 2018;10(3):163–175. https://doi.org/10.1007/s12402-018-0252-2
Beighton P, Solomon L, Soskolne CL (1973) Articular mobility in an African population. Ann Rheum Dis 32(5):413–418
Blagowidow, N. (2021, December). Obstetrics and gynecology in Ehlers‐Danlos syndrome: A brief review and update. In American Journal of Medical Genetics Part C: Seminars in Medical Genetics (Vol. 187, No. 4, pp. 593-598). Hoboken, USA: John Wiley & Sons, Inc.
Blajwajs, L., Williams, J., Timmons, W. et al. Hypermobility prevalence, measurements, and outcomes in childhood, adolescence, and emerging adulthood: a systematic review. Rheumatol Int 43, 1423–1444 (2023). https://doi.org/10.1007/s00296-023-05338-x
BMJ Best Practice. (2024). Ehlers-Danlos syndrome – Symptoms, Diagnosis, and Treatment. Retrieved from BMJ
Bovet C, Carison M, Taylor M. Quality of life, unmet needs, and iatrogenic injuries in rehabilitation of patients with Ehlers-Danlos syndrome hypermobility type/joint hypermobility syndrome. Am J Med Genet A. 2016;170:2044–2051.
Brock, I., Roizen, G., Prendergast, W., Ruhoy, I., & Francomano, C. (2022). Features of mast cell activation disease in patients with mannose-binding lectin deficiency and EDS. Journal of Allergy and Clinical Immunology, 140(2), 112-120. https://gersed.org/wp-content/uploads/2022/10/Brock2022.pdf
Bulbena A, Baeza-Velasco C, Bulbena-Cabre A, et al. Psychiatric and psychological aspects in the Ehlers-Danlos syndromes. Am J Med Genet C Semin Med Genet. 2017;175(1):237-245.
Bulbena, A., Gago, J., Pailhez, G., Sperry, L., & Fullana, M. A. (2011). Joint hypermobility syndrome is a risk factor trait for anxiety disorders: A 15-year follow-up cohort study. General Hospital Psychiatry, 33(4), 363–370.https://doi.org/10.1016/j.genhosppsych.2011.03.004
Bulbena, A., Pailhez, G., & Baeza-Velasco, C. (2017). Anxiety and joint hypermobility: An unexpected association. Frontiers in Psychology, 8, 1–4.
Campbell, S. (2021, November 12). EDS and POTS. Mayo Clinic Connect. https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/newsfeed-post/eds-and-pots/
Castori, M., Tinkle, B., Levy, H., Grahame, R., Malfait, F., & Hakim, A. (2017). A framework for the classification of joint hypermobility and related conditions. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 175(1), 148-157.
Castori, M., Celletti, C., Camerota, F., & Grammatico, P. (2021). Chronic pain in the spectrum of Ehlers–Danlos syndromes and hypermobility spectrum disorders. Clinics and Practice, 11(4), 781–795.
Cederlöf, M., Larsson, H., Lichtenstein, P., Almqvist, C., Serlachius, E., & Fazel, S. (2016). Prevalence of psychiatric disorders in individuals with Ehlers-Danlos syndrome or hypermobility syndrome and their siblings. BMC Psychiatry, 16(1), 207. https://doi.org/10.1186/s12888-016-0922-6
Celletti, C., Camerota, F., Castori, M., & Grammatico, P. (2012). Evaluation of sleep disturbance in joint hypermobility syndrome/Ehlers–Danlos syndrome hypermobility type. American Journal of Medical Genetics Part A, 158A(9), 2176-2180.
Cheung I, Vadas P. 2015. A new disease cluster: Mast cell activation syndrome, postural orthostatic tachycardia syndrome, and Ehlers–Danlos syndrome. J Allergy Clinical Immunol 135(2):AB65.
Cho ST, Kim KH. Pelvic floor muscle exercise and training for coping with urinary incontinence. J Exerc Rehabil. 2021 Dec 27;17(6):379-387. doi: 10.12965/jer.2142666.333. PMID: 35036386; PMCID: PMC8743604.
Chopra, P., & Tinkle, B. (2021). Joint hypermobility and hypermobile Ehlers-Danlos syndrome: Recognizing and managing an underdiagnosed spectrum disorder. Cleveland Clinic Journal of Medicine, 88(3), 157–164.
Chopra P, Tinkle B, Hamonet C, et al. Pain management in the Ehlers-Danlos syndromes. Am J Med Genet C Semin Med Genet. 2017;175C:212-219.
Csecs, J. L. L., Iodice, V., Rae, C. L., Brooke, A., Simmons, R., Quadt, L., Savage, G. K., Dowell, N. G., Prowse, F., Themelis, K., Mathias, C. J., Critchley, H. D., & Eccles, J. A. (2022). Joint hypermobility links neurodivergence to dysautonomia and pain. Frontiers in Psychiatry, 12, 786916.
Curtiss JE, Levine DS, Ander I, Baker AW. Cognitive-Behavioral Treatments for Anxiety and Stress-Related Disorders. Focus (Am Psychiatr Publ). 2021 Jun;19(2):184-189. doi: 10.1176/appi.focus.20200045. Epub 2021 Jun 17. PMID: 34690581; PMCID: PMC8475916.
Demmler, J. C., Atkinson, M. D., Reinhold, E. J., Choy, E., Lyons, R. A., & Brophy, S. T. (2019). Diagnosed prevalence of Ehlers-Danlos syndrome and hypermobility spectrum disorder in Wales, UK: a national electronic cohort study and case–control comparison. BMJ open, 9(11), e031365-e031365. https://doi.org/10.1136/bmjopen-2019-031365
Eccles, J. A., Quadt, L., McCarthy, H., Davies, K. A., Bond, R., David, A. S., Harrison, N. A., & Critchley, H. D. (2022). Variant connective tissue (joint hypermobility) and its relevance to depression and anxiety in adolescents: a cohort-based case–control study. BMJ open, 12(12), e066130-e066130. https://doi.org/10.1136/bmjopen-2022-066130
Eccles, J. A., Beacher, F. D. C., Gray, M. A., Jones, C. L., Minati, L., Harrison, N. A., & Critchley, H. D. (2012). Brain structure and joint hypermobility: relevance to the expression of psychiatric symptoms. BMJ Open, 2(6), e000995. https://doi.org/10.1136/bmjopen-2012-000995
Eccles, J., Smith, P., & Jones, L. (2022). Joint hypermobility links neurodivergence to dysautonomia and pain. Frontiers in Psychiatry, 13, 1234.
EDS and HSD – The Ehlers Danlos Society What is HSD and EDS (2024)
Ehlers-Danlos Society. (20th September 2024.). What is EDS? Retrieved from Ehlers-Danlos Society
Ehlers-Danlos Support UK. (n.d.). Oral and dental implications of the Ehlers-Danlos syndromes. Ehlers-Danlos Support UK. Retrieved April 9, 2025, from https://www.ehlers-danlos.org/information/aaoral-and-dental-implications-of-the-ehlers-danlos-syndromes/
Engelbert, R. H. H., Juul‐Kristensen, B., Pacey, V., de Wandele, I., Smeenk, S., Woinarosky, N., Sabo, S., Scheper, M. C., Russek, L., & Simmonds, J. V. (2017). The evidence‐based rationale for physical therapy treatment of children, adolescents, and adults diagnosed with joint hypermobility syndrome/hypermobile Ehlers Danlos syndrome. American journal of medical genetics. Part C, Seminars in medical genetics, 175(1), 158-167. https://doi.org/10.1002/ajmg.c.31545
Fikree A, Chelimsky G, Collins H, Kovacic K, Aziz Q. 2017. Gastrointestinal involvement in the Ehlers–Danlos syndromes. Am J Med Genet Part C Semin Med Genet 175C:181–187. http://bit.ly/2ofvFQO
Ferrari J, Parslow C, Lim E, Hayward A. Joint hypermobility: the use of a new assessment tool to measure lower limb hypermobility. Clin Exp Rheumatol. 2005 May-Jun;23(3):413-20. PMID: 15971435. https://europepmc.org/article/MED/15971435
Gensemer, C., Burks, R., Kautz, S., Judge, D. P., Lavallee, M., & Norris, R. A. (2021). Hypermobile Ehlers‐Danlos syndromes: Complex phenotypes, challenging diagnoses, and poorly understood causes. Developmental dynamics, 250(3), 318-344. https://doi.org/10.1002/dvdy.220
Glans, M., Humble, M.B., Elwin, M. et al. Self-rated joint hypermobility: the five-part questionnaire evaluated in a Swedish non-clinical adult population. BMC Musculoskelet Disord 21, 174 (2020). https://doi.org/10.1186/s12891-020-3067-1
Grahame, R. (1999). Joint hypermobility and genetic collagen disorders: Are they related? Archives of Disease in Childhood, 80(2), 188. https://doi.org/10.1136/adc.80.2.188
Hakim A, O’Callaghan C, De Wandele I, Stiles L, Pocinki A, Rowe P. 2017. Cardiovascular autonomic dysfunction in Ehlers-Danlos syndrome – Hypermobile type. Am J Med Genet Part C Semin Med Genet 175C:168–174.http://bit.ly/2orZ8r1
Hakim AJ, Grahame R. A simple questionnaire to detect hypermobility: an adjunct to the assessment of patients with diffuse musculoskeletal pain. Int J Clin Pract. 2003;57:163–6.
Hakim, A. J., De Wandele, I., O’Callaghan, C., Pocinki, A., & Rowe, P. (2017). Chronic fatigue in Ehlers-Danlos syndrome—Hypermobile type. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 175C(1), 175-180.
Halverson, C. M. E., Cao, S., Perkins, S. M., & Francomano, C. A. (2023). Comorbidity, misdiagnoses, and the diagnostic odyssey in patients with hypermobile Ehlers-Danlos syndrome. Genetics in Medicine Open, 1(1), 100812. https://doi.org/10.1016/j.gimo.2023.100812
Halverson, C. M. E., Penwell, H. L., & Francomano, C. A. (2023). Clinician-associated traumatization from difficult medical encounters: Results from a qualitative interview study on the Ehlers-Danlos Syndromes. SSM. Qualitative research in health, 3, 100237. https://doi.org/10.1016/j.ssmqr.2023.100237
Halverson, C., & Francomano, C. (2021). The long road to rare disease diagnosis: a hero’s journey. Molecular genetics and metabolism, 132, S297. https://doi.org/10.1016/S1096-7192(21)00542-4
Hugon-Rodin, J., Lebègue, G., Becourt, S., Hamonet, C., & Gompel, A. (2016). Gynecologic symptoms and the influence on reproductive life in 386 women with hypermobility type Ehlers-Danlos syndrome: A cohort study. Orphanet Journal of Rare Diseases, 11(124). https://doi.org/10.1186/s13023-016-0511-2
Hypermobility Syndromes Association. (n.d.). Hypermobility Disorders: A Clinician’s Guide. Retrieved from https://www.hypermobility.org/_files/ugd/518d8c_70c5473577c84eb98cad62d28bef0f81.pdf
Hypermobility Syndromes Association. (n.d.). What is hypermobility? Retrieved February 18, 2025, from https://www.hypermobility.org/what-is-hypermobility
Hypermobility Syndromes Association. (n.d.). Bladder issues. http://Hypermobility.org . Retrieved April 1, 2025, from https://www.hypermobility.org/bladder-issues
International Consortium on Ehlers-Danlos syndromes and hypermobility spectrum disorders. (Accessed May 2022).
Jessee, A. D., Gourley, M. M., & Valovich McLeod, T. C. (2012). Bracing and taping techniques and patellofemoral pain syndrome. Journal of Athletic Training, 47(3), 358-359. https://doi.org/10.4085/1062-6050-47.3.07
Kampoureli CN, Rae CL, Gould Van Praag C, et al. Neural processes linking joint hypermobility and anxiety: key roles for the amygdala and insular cortex. The British Journal of Psychiatry. Published online 2025:1-7. https://doi.org/10.1192/bjp.2024.259
Kampouraki, E., Horder, J., & Eccles, J. A. (2024). Neural processes linking joint hypermobility and anxiety. medRxiv.https://doi.org/10.1101/2024.10.10.24315234
Kindgren E, Quiñones Perez A, Knez R. Prevalence of ADHD and Autism Spectrum Disorder in Children with Hypermobility Spectrum Disorders or Hypermobile Ehlers-Danlos Syndrome: A Retrospective Study. Neuropsychiatr Dis Treat. 2021;17:379-388
Knight, D. (2022). Electrical Stimulation for Hypermobility Pain: Part 1. Mayo Clinic Connect. Retrieved from https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/newsfeed-post/electrical-stimulation-for-hypermobility-pain-part-1/
Kumar, B. M. D., & Lenert, P. M. D. P. (2017). Joint Hypermobility Syndrome: Recognizing a Commonly Overlooked Cause of Chronic Pain. The American journal of medicine, 130(6), 640-647. https://doi.org/10.1016/j.amjmed.2017.02.013
Lam C, Amarasinghe G, Zarate-Lopez N, et al, Gastrointestinal symptoms and nutritional issues in patients with hypermobility disorders: assessment, diagnosis and management, Frontline Gastroenterology 2023;14:68-77.
Maarj, M., Pacey, V., Tofts, L., Clapham, M., & Coda, A. (2023). The Impact of Podiatric Intervention on the Quality of Life and Pain in Children and Adolescents with Hypermobility. International journal of environmental research and public health, 20(17), 6623. https://doi.org/10.3390/ijerph20176623
Malfait, F., De Paepe, A., & Castori, M. (2017). The Ehlers-Danlos syndromes: Historical background, clinical features, and diagnostic guidelines. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 175(1), 8–26. https://doi.org/10.1002/ajmg.c.31552
Malfait, F., Francomano, C., Byers, P., Belmont, J., Berglund, B., Black, J., … & Tinkle, B. (2020). The 2017 international classification of the Ehlers-Danlos syndromes. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 175(1), 5-7.
Mayo Clinic. (n.d.). Ehlers-Danlos syndrome. Retrieved February 18, 2025, from https://www.mayoclinic.org/
Meyer, K.J., Chan, C., Hopper, L. et al. Identifying lower limb specific and generalised joint hypermobility in adults: validation of the Lower Limb Assessment Score. BMC Musculoskelet Disord 18, 514 (2017). (Free to download)
Miller, L. J., Reisman, J. E., McIntosh, D. N., & Simon, J. (2001). An ecological model of sensory modulation: Performance of children with fragile X syndrome, autistic disorder, attention-deficit/hyperactivity disorder, and sensory modulation dysfunction. In Understanding the nature of sensory integration with diverse populations (pp. 143-154). Therapy Skill Builders.
N Chang, D Borovsky, Y Yuan, D Armstrong, a81 Gastrointestinal (Gi) features of hypermobile Ehlers Danlos Syndrome (heds) and hypermobility spectrum disorder (hsd): a scoping review, Journal of the Canadian Association of Gastroenterology, Volume 7, Issue Supplement_1, March 2024, Pages 56–57, https://doi.org/10.1093/jcag/gwad061.081
Nathan JA, Davies K, Swaine I. Hypermobility and sports injury. BMJ open sport & exercise medicine. 2018 Oct 1;4(1):e000366.
Nicholson LL, Chan C. The Upper Limb Hypermobility Assessment Tool: A novel validated measure of adult joint mobility. Musculoskelet Sci Pract. 2018 Jun;35:38-45. https://doi.org/10.1016/j.msksp.2018.02.006
Nicholson, L. L., Chan, C., Tofts, L., & Pacey, V. (2022). Hypermobility syndromes in children and adolescents: Assessment, diagnosis and multidisciplinary management. Australian Journal of General Practice, 51(6). https://doi.org/10.31128/AJGP-03-21-5870
Pezaro, S., Pearce, G., & Reinhold, E. (2021). A clinical update on hypermobile Ehlers-Danlos syndrome during pregnancy, birth, and beyond. British Journal of Midwifery, 29(9), 492-500.
Russek, L. (2023). Overly flexible connective tissue causes problems in joints and throughout the body − and is often missed by doctors. The Conversation: Health.
Russek, L. (2023, May 10). First, do no harm. Why you should identify hypermobile patients. Journal of Orthopaedic & Sports Physical Therapy. https://doi.org/10.2519/jospt.blog.20230510
Russek, L. N., Stott, P., & Simmonds, J. (2019). Recognizing and Effectively Managing Hypermobility-Related Conditions. Physical therapy, 99(9), 1189-1200. https://doi.org/10.1093/ptj/pzz078
Scheper, M. C., De Vries, J. E., Verbunt, J., & Engelbert, R. H. H. (2015). Chronic pain in hypermobility syndrome and ehlers-danlos syndrome (Hypermobility type): It is a challenge. Journal of Pain Research, 8(default), 591-601. https://doi.org/10.2147/JPR.S64251
Seeley, M. C., Lau, D. H., & Gallagher, C. (2023). Postural orthostatic tachycardia syndrome: Diagnosis and management guide for nurses. Nurse Researcher, 30(4), 14–21.
The Ehlers-Danlos Society. (2017). 2017 EDS international classification. The Ehlers-Danlos Society. https://www.ehlers-danlos.com/2017-eds-international-classification/
The Ehlers-Danlos Society. (2022). Assessing joint hypermobility. Retrieved from https://www.ehlers-danlos.com/assessing-joint-hypermobility/
The Ehlers-Danlos Society. (2025). Hypermobile Ehlers-Danlos Syndrome (hEDS). Retrieved from https://www.ehlers-danlos.com/what-is-eds/hypermobile-ehlers-danlos%20-syndrome-heds
The Ehlers-Danlos Society. (n.d.). Bladder problems. Retrieved from https://www.ehlers-danlos.org/what-is-eds/information-on-eds/bladder-problems/
The Ehlers-Danlos Society. (n.d.). Diagnosis. The Ehlers-Danlos Society. https://www.ehlers-danlos.com/diagnosis/
The Ehlers-Danlos Society. (n.d.). Digestive disorders. Retrieved from https://www.ehlers-danlos.org/what-is-eds/information-on-eds/digestive-disorders/
The Ehlers-Danlos Society. (n.d.). Dysautonomia. Retrieved from https://www.ehlers-danlos.com/dysautonomia/
The Ehlers-Danlos Society. (n.d.). Genetics and inheritance. The Ehlers-Danlos Society. https://www.ehlers-danlos.com/genetics-and-inheritance/
The Ehlers-Danlos Society. (n.d.). What is HSD? Retrieved February 18, 2025, from https://www.ehlers-danlos.com/what-is-hsd/
The Ehlers-Danlos Society. (n.d.). Why a multidisciplinary approach is necessary for EDS. Retrieved February 25, 2025, from https://www.ehlers-danlos.com/
The Ehlers-Danlos Support UK. New research shows hEDS and HSD 10 times more common than previously thought – The Ehlers-Danlos Support UK
Tinkle, B. T., & Levy, H. P. (2017). Ehlers-Danlos syndrome: Multidisciplinary approach to diagnosis and management. American Journal of Medical Genetics, 173(3), 791-798. https://doi.org/10.1002/ajmg.a.38145
Tinkle, B., Castori, M., Berglund, B., Cohen, H., Grahame, R., Kazkaz, H., & Levy, H. (2017). Hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD): Clinical description and natural history. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 175(1), 48-69.
Trudgian, R., & Flood, T. (2024). An exploration of the journey to diagnosis of Ehlers-Danlos Syndrome (EDS) for women living in Australia. PLoS ONE, 19(7), e0307574. https://doi.org/10.1371/journal.pone.0307574
Wada, M., Hayashi, K., Seino, K., Ishii, N., Nawa, T., & Nishimaki, K. (2023). Qualitative and quantitative analysis of self-care regarding sensory issues among people with neurodevelopmental disorders. Frontiers in Child and Adolescent Psychiatry, 2, 1177075. https://doi.org/10.3389/frcha.2023.1177075
Wang, Y., Strutton, P.H. & Alexander, C.M. Falls and balance impairment; what and how has this been measured in adults with joint hypermobility? A scoping review. BMC Musculoskelet Disord 26, 88 (2025). https://doi.org/10.1186/s12891-025-08318-3
Wells, R., Tonkin, E., & Neumann, D. L. (2021). Managing postural orthostatic tachycardia syndrome associated with joint hypermobility and Ehlers-Danlos syndrome. Clinical Autonomic Research, 31, 365–378.https://doi.org/10.1007/s10286-021-00791-6
Whalen, K. C., & Crone, W. (2022). Multidisciplinary Approach to Treating Chronic Pain in Patients with Ehlers–Danlos Syndrome: Critically Appraised Topic. Journal of Pain Research, 15, 2893-2904. https://doi.org/10.2147/JPR.S377790
Yamamoto, N., & Nakamura, S. (2017). Relationships between the tensile strength and diameter of collagen fibrils isolated from mouse tail tendons. Journal of Biomechanical Science and Engineering, 12(3), 16-00511.
Zarate N, Farmer AD, Grahame R, Mohammed SD, Knowles CH, Scott SM, Aziz Q. Unexplained gastrointestinal symptoms and joint hypermobility: is connective tissue the missing link? Neurogastroenterol Motil. 2010 Mar;22(3):252-e78. doi: 10.1111/j.1365-2982.2009.01421.x. Epub 2009 Oct 15. PMID: 19840271.