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Marielle:
Een draadje met een overzicht van wetenschappelijke artikelen over HMS/EDS.

Baeza-Velasco C, Gély-Nargeot MC, Bulbena Vilarrasa A, Bravo JF. Joint hypermobility syndrome: problems that require psychological intervention. Rheumatol Int. 2011 Mar 4. [Epub ahead of print] PubMed PMID: 21373784.

Bendik EM, Tinkle BT, Al-shuik E, Levin L, Martin A, Thaler R, Atzinger CL, Rueger J, Martin VT. Joint hypermobility syndrome: A common clinical disorder associated with migraine in women. Cephalalgia. 2011 Apr;31(5):603-13. Epub 2011  Jan 28. PubMed PMID: 21278238.

Castori M, Camerota F, Celletti C, Grammatico P, Padua L. Ehlers-Danlos syndrome hypermobility type and the excess of affected females: possible mechanisms and perspectives. Am J Med Genet A. 2010 Sep;152A(9):2406-8. PubMed PMID: 20684008.

Dickson MJ, Isdale M, Davies S. Joint hypermobility syndrome. Urinary incontinence as presenting feature. BMJ. 2011 Feb 15;342:d1002. doi: 10.1136/bmj.d1002. PubMed PMID: 21324987.

Eccles J, Harrison N, Critchley H. Joint hypermobility syndrome. Psychiatric manifestations. BMJ. 2011 Feb 15;342:d998. doi: 10.1136/bmj.d998. PubMed PMID: 21325002.

Farmer AD, Douthwaite H, Gardiner S, Aziz Q, Grahame R. A novel in vivo skin extensibility test for joint hypermobility. J Rheumatol. 2010 Jul;37(7):1513-8. Epub 2010 Jun 15. PubMed PMID: 20551108.

Keer R, Simmonds J. Joint protection and physical rehabilitation of the adult  with hypermobility syndrome. Curr Opin Rheumatol. 2011 Mar;23(2):131-6. Review. PubMed PMID: 21252682.

Knight I, Bird HA. Joint hypermobility syndrome. BMJ. 2010 Jul 5;341:c3044. doi: 10.1136/bmj.c3044. PubMed PMID: 20603316.

Molloholli M. Joint hypermobility syndrome. Implications for obstetric care. BMJ. 2011 Feb 15;342:d1003. doi: 10.1136/bmj.d1003. PubMed PMID: 21324988.

Mohammed SD, Lunniss PJ, Zarate N, Farmer AD, Grahame R, Aziz Q, Scott SM. Joint hypermobility and rectal evacuatory dysfunction: an etiological link in abnormal connective tissue? Neurogastroenterol Motil. 2010 Oct;22(10):1085-e283.  Epub 2010 Jul 5. PubMed PMID: 20618831.

Remvig, L., Duhn, P., Ullman, S., Arokoski, J., Jurvelin, J., Safi, A., Jensen, F., Farholt, S., Hove, H., & Juul-Kristensen, B. (2010) Skin signs in Ehlers–Danlos syndrome: clinical tests and para-clinical methods. Scandinavian Journal of Rheumatology, 39(6), 511-517. DOI: 10.3109/03009741003781977

Remvig L, Engelbert RH, Berglund B, Bulbena A, Byers PH, Grahame R, Juul-Kristensen B, Lindgren KA, Uitto J, Wekre LL. Need for a consensus on the methods by which to measure joint mobility and the definition of norms for hypermobility that reflect age, gender and ethnic-dependent variation: is revision of criteria for joint hypermobility syndrome and Ehlers-Danlos syndrome  hypermobility type indicated? Rheumatology (Oxford). 2011 Jun;50(6):1169-71. Epub 2011 Apr 10. PubMed PMID: 21482540.

Rombaut, L., Malfait, F., RIMBAUT, S.T.E.V.E.N., Vander Cruyssen, B., De Paepe, A. & Calders, P. (2010). Health status and impact of pain : a comparative study between female patients with the Ehlers-Danlos syndrome, fibromyalgia and rheumatoid arthritis. In: World Congress of the OsteoArthritis-Research-Society-International, Brussels, Belgium, 2010-09-23. S224-S225.

Rombaut, L., De Paepe, A., Malfait, F., Cools, A. & Calders, P. (2010). Joint position sense and vibratory perception sense in patients with Ehlers-Danlos syndrome type III (hypermobility type). CLINICAL RHEUMATOLOGY, 29(3) 289-295. http://dx.doi.org/10.1007/s10067-009-1320-y.

Rombaut, L., Malfait, F., Cools, A., De Paepe, A. & Calders, P. (2010). Musculoskeletal complaints, physical activity and health-related quality of life among patients with the Ehlers-Danlos syndrome hypermobility type. DISABILITY AND REHABILITATION, 32(16) 1339-1345. http://dx.doi.org/10.3109/09638280903514739.

Ross J, Grahame R. Joint hypermobility syndrome. BMJ. 2011 Jan 20;342:c7167. doi: 10.1136/bmj.c7167. PubMed PMID: 21252103.

Rombaut, L., Malfait, F., De Wandele, I., Thijs, Y., Palmans, T., De Paepe, A., & Calders, P. (2011) Balance, gait, falls and fear of falling in women with the hypermobility type of ehlers-danlos syndrome. Arthritis Care & Research, n/a-n/a. DOI: 10.1002/acr.20557

Thijs, Y., Vingerhoets, G., Pattyn, E., Rombaut, L. & Witvrouw, E. (2010). Does bracing influence brain activity during knee movement : an fMRI study. KNEE SURGERY SPORTS TRAUMATOLOGY ARTHROSCOPY, 18(8) 1145-1149. http://dx.doi.org/10.1007/s00167-009-1012-9.

Tinkle BT, Bird HA, Grahame R, Lavallee M, Levy HP, Sillence D. The lack of clinical distinction between the hypermobility type of Ehlers-Danlos syndrome and the joint hypermobility syndrome (a.k.a. hypermobility syndrome). Am J Med Genet  A. 2009 Nov;149A(11):2368-70. PubMed PMID: 19842204.

Voermans NC, Knoop H. Both pain and fatigue are important possible determinants of disability in patients with the Ehlers-Danlos syndrome hypermobility type. Disabil Rehabil. 2011;33(8):706-7. Epub 2010 Nov 15. PubMed PMID: 21077749.

Voermans NC, Knoop H, Bleijenberg G, van Engelen BG. Fatigue is associated with muscle weakness in Ehlers-Danlos syndrome: an explorative study. Physiotherapy. 2011 Jun;97(2):170-4. Epub 2011 Apr 6. PubMed PMID: 21497252.

Als je artikelen weet die nog niet in de lijst staan, geef dat dan even aan (kan gewoon in dit draadje), dan zullen ze er bij worden gezet.

Marielle:
Rombaut, L., Malfait, F., De Wandele, I., Thijs, Y., Palmans, T., De Paepe, A., & Calders, P. (2011) Balance, gait, falls and fear of falling in women with the hypermobility type of ehlers-danlos syndrome. Arthritis Care & Research, n/a-n/a. DOI: 10.1002/acr.20557


--- Citaat ---Abstract
Objective:
To investigate balance, gait, falls and fear of falling in patients with the hypermobility type of Ehlers-Danlos Syndrome (EDS-HT).

Methods:
Twenty-two women with EDS-HT and 22 gender and aged matched healthy control subjects participated in the study. Each subject performed the modified Clinical Test of Sensory Interaction on Balance (mCTSIB) and Tandem Stance test (TS) on an Accugait force platform to assess balance by centre of pressure-based postural sway measures. The GaitRite® walkway system was used to record spatial-temporal gait variables during 3 walking conditions (single task, cognitive-task, functional-task). Data about fall frequency and circumstances were collected by retrospective recall and fear of falling was assessed by the modified Falls Efficacy Scale.

Results:
Compared with healthy subjects, EDS-HT subjects showed significantly impaired balance, reflected by increased sway velocity, medio-lateral and anterior-posterior sway excursion, and sway area during mCTSIB and TS. Gait velocity, step length and stride length were significantly smaller during all walking conditions and a significant dual-task-related decrement was found for gait velocity, step and stride length, and cadence in the EDS-HT subjects compared to the control group. Ninety-five percent of the patients fell during the past year and some fear of falling was measured.

Conclusion:
This study is the first to establish that EDS-HT is associated with balance and gait impairments, increased fall frequency and poorer balance confidence, implying a decrease in the safety of standing in everyday life situations. Whether these deficits can be improved by appropriate exercise programs needs to be addressed in future research.
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Marielle:
Remvig, L., Duhn, P., Ullman, S., Arokoski, J., Jurvelin, J., Safi, A., Jensen, F., Farholt, S., Hove, H., & Juul-Kristensen, B. (2010) Skin signs in Ehlers–Danlos syndrome: clinical tests and para-clinical methods. Scandinavian Journal of Rheumatology, 39(6), 511-517. DOI: 10.3109/03009741003781977


--- Citaat ---Objective: The criteria for Ehlers–Danlos syndrome (EDS) and the hypermobility syndrome (HMS) should be reliable. Examination for general joint hypermobility has high reliability but there is only sparse information on the reliability of skin tests, and no information on the level of normal skin extensibility. The present study aimed to assess skin signs by means of clinical and para-clinical methods.

Methods: A total of 31 EDS patients and 28 healthy controls were examined blinded and in random order. Inter-examiner analysis of clinical tests for skin extensibility, consistency, scarring, and bruising was performed, followed by analyses of extensibility with the suction cup (SC), consistency with a soft tissue stiffness meter (STSM), and thickness with ultrasonography (US). Semi-quantitative assessment of skin extensibility in healthy controls was incorporated in the tests.

Results: The clinical analyses demonstrated kappa values of: 0.72 for extensibility, 0.23 for consistency, 0.53 for scarring, and 0.63 for bruising. Skin extensibility measurements in healthy controls (n = 28) were 2.79 and 2.93 cm (mean + 2 SD), respectively, by the two examiners. There were significant differences between patients with classical-type EDS and controls with respect to skin extensibility by SC (4.91 vs. 12.52 kPa/mm) and skin consistency by STSM (0.59 vs. 0.76 N). We found no difference in skin thickness.

Conclusion: The reproducibility of the clinical skin tests was substantial to good, apart from the consistency measurements. We suggest that skin consistency is withdrawn as a diagnostic criterion. The upper level for normal skin extensibility should be 3 cm. SC and STSM are promising para-clinical methods, but their diagnostic sensitivity and specificity need to be determined.
--- Einde van citaat ---

Belangrijkste bevinding: deze onderzoekers vinden dat vanaf 3 cm sprake is van abnormale rekbaarheid van de huid.

Nihlaeth:
Ik vind dat deze vrouw erg irritant praat maar haar onderzoek is zeker interessant: http://prettyill.com/videos/watch/why_eds_pots_patients_are_so_ill_relief_the_driscoll_theory

Het is een theorie over POTS in EDS patienten. Deze arts denkt dat het te maken heeft met een lage overdruk van de hersenvloeistof die mogelijk ook de vaak voorkomende trage ontwikkeling van kinderen met EDS veroorzaakt.

Nihlaeth:
Ik kwam dit artikel tegen in een facebook groep, ik vind dit het beste wetenschappelijke artikel over EDS type 3 dat ik ooit gelezen heb, het enige wat ik echt mis zijn de geassocieerde blaasproblemen.

Dit ga ik zeker weten aan mijn huisarts geven, misschien dat het voor wat meer begrip kan zorgen...

http://cedsa.org/Ehlers-Danlos_Syndrome__Hypermobility_Type_-_GeneReviewsTM_-_NCBI_Bookshelf.pdf

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