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Ehlers-Danlos Syndrome EDS

Ehlers-Danlos Syndrome EDS. Hôtel-Dieu de Paris Bird meeting ASED 06 09 2012. Claude Hamonet*, Monique Vienne **. *Department of Physical Medicine and Rehabilitation (Pr. S. Poiraudeau, Dr. JY Maigne), Hôtel-Dieu Hospital, Paris **IMAP, Nice.

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Ehlers-Danlos Syndrome EDS

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  1. Ehlers-Danlos SyndromeEDS Hôtel-Dieu de Paris Bird meeting ASED 06 09 2012

  2. Claude Hamonet*, Monique Vienne ** *Department of Physical Medicine and Rehabilitation(Pr. S. Poiraudeau, Dr. JY Maigne), Hôtel-Dieu Hospital, Paris **IMAP, Nice. With support of Department of Public health and Epidemiology (Pr. Ravaud), Hôtel-Dieu Hospital Paris. Grant : Fondation de France.

  3. Welcome Dr. Bird, you safe the life of our patients or you enhance their quality of life

  4. André GrossiordThe pionner of French Rehabilitation. Garches.

  5. First description : a law student.By Edward EHLERS, a Dermatologist, Danish Society of Dermatology Copenhaguen 1215 1900. Published in german language

  6. What is EDS today? Agenetic disorder of connective tissue (collagen especially) autosomal dominant. Without genetic test, the diagnosis is clinical Which is not a "rare disease" but a frequent and an syndrome currently confused with another diagnosis…

  7. Most important signs for diagnosis (personnal serie of 586 patientsBeighton scored 4/9 or more) PAINS(98%): (joints, muscles, belly, chest, skin, head,..) 71% very intensives ASTHENIA(97%) 69% very intensive PROPRIOCEPTIVESdisorders(85%) HYPERMOBILITY(100%) HEMORRHAGES(92%) FRAGILITY OF THE SKIN(86,6%) Otherfamily case(s) (95%).

  8. Respiratorysymptoms in EDS (586 patients) Pseudo Asthma : 65% Dyspnea : 66% Dysphonia : 53% Bronchitis : 56%

  9. Strentchening of skin Popular but inconstant

  10. Beighton test : the thumbsign

  11. KNEES Recurvatum

  12. Ecchymosis

  13. « EDS FOOT » (Flat forward, Hollow in the middle, normal behind).

  14. Pathophysiologicalhypothesis (proprioception) No (or bad) emission of signalsfromsensors rom too soft tissues.

  15. Proprioceptive garmentsCereplas.

  16. Rigidtrunkorthesis

  17. Specialseatadapted for a young boy with EDS

  18. Light rest hand orthesis (Néokraft)

  19. Functionnal hand splint

  20. Murphy finger orthesis

  21. Lowerlimborthesiswith hip device to stop hip luxation

  22. Lower limbs orthesis with elastic artificial muscles (Made by JC Chignon, Orthesist)

  23. She is walking,She was in a Wheelchair !

  24. The discovery of Dr. Bird 1980, F.M. BIRD invented « Percussive intrapulmonary Ventilation », with internal percussion of pulmonary structures by IMPULSATOR

  25. Effects of Impulsator Improve breathing statusand the new discover that (+ 02) is also in EDS a treatment against fatigueand migraines !

  26. A chidren using percussionnaire + oxygen at home Carnitine is also used with success against the fatigue.

  27. Conclusion « To believe in rehabilitation is to believe in humanity » Howard Rusk (New-York)

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