Ce syndrome est souvent confondu avec d’autres maladies rares comme la fibromyalgie, le syndrome d’Ehlers-Danlos.
– Douleurs articulaires et autour des articulations.
– Sensation de fatigue dès le réveil.
– Troubles du contrôle des mouvements volontaires.
– Instabilité articulaires responsable d’entorses.
– Amincissement et pâleur de la peau faisant apparaître les veines.
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L’équipe médicale de la consultation Ehlers-Danlos dirigée par le Pr Hamonet, indique que « la méconnaissance des signes du syndrome conduit (…), du fait surtout des douleurs, à d’autres orientations diagnostiques, plus connues en rhumatologie telles que spondylarthrite ankylosante, polyarthrite rhumatoïde, Gougerot-Sjögren, arthrose.
L’erreur la plus fréquente reste la fibromyalgie. (…) Actuellement, les signes utilisés pour établir le diagnostic de fibromyalgie sont un authentique copié/collé de ceux du syndrome d’Ehlers-Danlos.»
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