The role of narrative medicine in the management of joint hypermobility syndrome/Ehlers-Danlos syndrome, hypermobility type

American Journal of Medical Genetics, Part C: Seminars in Medical Genetics

Volumn 169, Issue 1, 2015, Pages 123-129

  Knight, Isobel ^a  

^a NONE   (United Kingdom)

Author keywords

Bowen technique; Ehlers Danlos syndrome; Joint hypermobility syndrome; Narrative medicine

Indexed keywords

ANXIETY DISORDER; ARTICLE; ASTHMA; ATTENTION DEFICIT DISORDER; BLADDER CAPACITY; DANCING; DEPRESSION; DEVELOPMENTAL COORDINATION DISORDER; EHLERS DANLOS SYNDROME; ENDOMETRIOSIS; FATIGUE; HEADACHE; HUMAN; JOINT HYPERMOBILITY SYNDROME EHLERS DANLOS SYNDROME HYPERMOBILITY TYPE; JOINT LAXITY; MEDICAL EXPERT; MEDICINE; NARRATIVE MEDICINE; NARRATIVE THERAPY; PAIN; PHYSICAL EXAMINATION; POSTURAL ORTHOSTATIC TACHYCARDIA SYNDROME; PRIORITY JOURNAL; SPORT; TEMPOROMANDIBULAR JOINT; TREATMENT OUTCOME; TREATMENT RESPONSE; DISEASE MANAGEMENT; DOCTOR PATIENT RELATION; EHLERS-DANLOS SYNDROME; PATHOPHYSIOLOGY; PATIENT; PSYCHOLOGY; VERBAL COMMUNICATION;

DISEASE MANAGEMENT; EHLERS-DANLOS SYNDROME; HUMANS; NARRATION; PATIENTS; PHYSICIAN-PATIENT RELATIONS;

EID: 84925396707     PISSN: 15524868     EISSN: 15524876     Source Type: Journal    
DOI: 10.1002/ajmg.c.31428     Document Type: Article

References (44)

1. Baeza-Velasco C, Gely-Nargeot M, BulbenaVilarrasa A, Bravo J. 2011. Joint hypermobility syndrome: Problems that require psychological intervention. Rheumatol Int 31:1131-1136.
2. Bird H. 2007. Hormonal aspects of hypermobility. Hypermobility Syndrome Association Newsletter Autumn 1-10.
3. Bulbena A, Aguillo A, Pailhez G, Martin-Santos R, Porta M, Guitart, Gago J. 2004. Is joint hypermobility related to anxiety in a non-clinical population also? Psychosomatics 45:432-437.
4. Castori M. 2012. Ehlers-Danlos syndrome, hypermobility type: An underdiagnosed hereditary connective tissue disorder with mucocutaneous, articular and systemic manifestations. ISRN Dermatol 2012:751768.
5. Castori M, Dordoni C, Valiante M, Sperduti I, Ritelli M, Morlino S, Chiarelli N, Celletti C, Venturini M, Calzavara-Pinton P, Camerota F, Grammatico P, Colombi M. 2014. Nosology, and inheritance pattern (s) of joint hypermobility syndrome, Ehlers-Danlos syndrome, hypermobility type: A study of intra- and inter-familial variability in 23 Italian pedigrees. Am J Med Genet Part A 164A:3010-3020.
6. Charon R. 2001. Narrative medicine-a model for empathy, reflection, profession, and trust. JAMA Part C 286C:1897.
7. Charon R. 2007. What to do with stories-the sciences of narrative medicine. Can Fam Physician 53:1265-1267.
8. Charon R. 2012. At the membranes of care: Stories in narrative medicine. Acad Medicine 87:342-347.
9. Divinsky M. 2007. Stories for life. Can Fam Physician 53:203-205.
10. Eccles J, Felix D, Beacher C, Gray M, Jones C, Miniati L, Harrison N, Critchley H. 2012. Brain structure and joint hypermobility: Relevance to the expression of psychiatric symptoms. Br J Psychiat Part C 200C:508-509.
11. Ercolani M, Galvani M, Franchini C, Baracchini F, Chattat R. 2008. Benign joint hypermobility syndrome: Psychological features and psychopathological symptoms in a sample pain-free at evaluation. Percept Motor Skills 107:246-256.
12. Ferrell W, Ferrell P. 2010. Proprioceptive dysfunction in JHS and its management. In: Hakim A, Keer R, and Grahame R, (eds). Hypermobility, fibromyalgia and chronic pain. Philadelphia, PA: Elsevier. 96-104.
13. Fikree A, Grahame R, Aktar R, Farmer A, Hakim A, Morris J, Knowles C, Aziz Q. 2014. A prospective evaluation of undiagnosed joint hypermobility syndrome in patients with gastrointestinal symptoms. Clin Gastroenterol Hepatol 12:1680-1687.
14. Grahame R. 2003. Hypermobility and hypermobility syndrome. In: Keer R, Grahame R, (eds). Hypermobility syndrome: Recognition and management for physiotherapists. Philadelphia, PA: Elsevier. p1-15.
15. Grahame R. 2009. Hypermobility: An important but often neglected area within rheumatology. Hypermobility Syndrome Association Newsletter Spring 4-5.
16. Gurley-Green S. 2001. Living with the hypermobility syndromes. Rheumatology 40:487-489.
17. Hakim A, Grahame R, Norris P, Hopper C. 2005. Local anaesthetic failure in joint hypermobility syndrome. J Royal Soc Med 98:84-85.
18. Hakim A, Sahota A. 2006. Joint hypermobility and skin elasticity: The hereditary disorders of connective tissue. Clin Dermatol 24:521-533.
19. Hakim A. 2012. A patient survey of treatment outcomes in joint hypermobility syndrome. HMSA Newsletter Nov: 25-26.
20. Hunter A. 2011. Tearing up the rule book. Royal college of speech, language therapy. May 20-21.
21. Keer R. 2003. Physiotherapy assessment of the hypermobile adult. In: Keer R, Grahame R, (eds). Hypermobility Syndrome: Recognition and Management for Physiotherapists. Philadelphia, PA: Elsevier. 667-86.
22. Kirby A, Davies R. 2007. Developmental coordination disorder and joint hypermobility syndrome-Overlapping disorders? Implications for research and clinical practice. Child Care Health Dev 33:513-519.
23. Kirby A, Davies R, Bryant A. 2005. Hypermobility syndrome and developmental coordination disorder: Similarities and features. Int J Ther Rehabil 12:431-437.
24. Knight I, Bird H. 2010. A patient's journey-Joint hypermobility syndrome. BMJ 341:c3044.
25. Knight I. 2011. A Guide to living with hypermobility syndrome-bending without breaking. London: Singing Dragon Press.
26. Knight I, McCormack M, Bird H. 2012. Managing joint hypermobility for dance teachers. Foundations for Excellence, Sheet, 7; South West Music Schools: Dance UK.
27. Knight I. 2013. Managing Ehlers-Danlos type III hypermobility syndrome. London: Singing Dragon Press.
28. Koldas Dogan, Taner D, Evcik Y. 2011. Benign joint hypermobility syndrome in patients with attention deficit/hyperactivity disorders. Turk J Rheumatol 26:187-192.
29. Martin-Santos R, Bulbena A, Porta M, Gago J, Molina L, Duro J. 1998. Association between joint hypermobility syndrome and panic disorder. Am J Psychiatry 155:1578-1583.
30. Mathias C, Low D, Iodice V, Owens P, Kirbis M, Grahame R. 2012. Postural tachycardia syndrome-current experience and concepts. Nature Rev Neurol 8:22-34.
31. Mayer K, Kennerknecht I, Steinmann B. 2013. Clinical utility gene card for: Ehlers-Danlos syndrome types I-VII and variants-update 2012. Eur J Hum Genet 21: DOI: 10.1038/ejhg.2012.162
32. McCormack M, Briggs J, Hakim A, Grahame R. 2004. Joint laxity and the benign joint hypermobility syndrome in student and professional ballet dancers. J Rheumatol 31:173-178.
33. McIntosh L, Mallett V, Frahm J, Richardson D, Evans I. 1995. Gynecologic disorders in women with Ehlers-Danlos syndrome. J Soc Gynecol Investig 2:559-564.
34. Norton P, Baker J, Sharp H, Warenski J. 1995. Genitourinary prolapse and joint hypermobility in women. Obstet Gynaecol 85:225-228.
35. Nowaczyk M. 2012. Narrative medicine in clinical genetics practice. Am J Med Genet Part A 158A:1941-1947.
36. Remvig L, Flycht L, Christensen KB, Juul-Kristensen B. 2014. Lack of consensus on tests and criteria for generalized joint hypermobility, Ehlers-Danlos syndrome: Hypermobile type and joint hypermobility syndrome. Am J Med Genet Part A 164A:591-596.
37. Ruemper A, Watkins K. 2012. Correlations between general joint hypermobility and joint hypermobility syndrome and injury in contemporary dance students. J Dance Med Sci 16:161-166.
38. Russek L. 1999. Hypermobility syndrome. Physical Ther 79:591-599.
39. Simmonds J, Keer R. 2007. Hypermobility and the hypermobility syndrome. Man Ther 12:298-309.
40. Soycen E, Esen F. 2010. Benign joint hypermobility syndrome-a cause of childhood asthma. Med Hypotheses 74:823-824.
41. Tinkle B. 2008. Issues and management of joint hypermobility. Greens Fork, IN: Left Paw Press.
42. Tinkle B. 2010. Joint hypermobility handbook. Greens Fork, IN: Left Paw Press.
43. Wilks J, Knight I. 2014. The Bowen Technique-treating complex and common conditions. London: Singing Dragon Press.
44. Williams M. 2014. The low FODMAP diet in Hypermobility EDS. Fragile Links Newsletter EDS UK Spring 2014:17-18.