D’une première rencontre à celles qui ont suivi, très impressionnée par le caractère envahissant de la mucoviscidose au quotidien pour les malades et leurs proches mais aussi par la résilience, le dynamisme et la joie de vivre des personnes rencontrées, j’ai souhaité mieux comprendre cette maladie, ses spécificités et l’espoir des uns et des autres.
Je tiens à remercier le Docteur Virginie Colomb-Jung, directrice du Département médical de l’association Vaincre la Mucoviscidose, pour son éclairage précieux sur la maladie.
Je vous invite à découvrir les différents articles de cette série :
Témoignage tout en délicatesse et retenue d’Hélène, maman de deux jeunes femmes atteintes par la maladie. Portrait aussi d’une famille « portée » par une attitude face à la vie.
⇒ A mes proches et aidants professionnels… Merci !
Témoignage de Claire, 21 ans, la tête pleine de rêves d’avenir.
⇒ Interview du Docteur Virginie Colomb-Jung
Directrice du Département médical de l’association vaincre la mucoviscidose, elle insiste dans cette interview sur l’importance d’informer les proches sur la maladie et sur le rôle immense enfin pris en compte des aidants naturels, au premier rang desquels se trouvent les parents.
⇒ Fiche pratique sur la maladie
Réalisée en collaboration avec le Docteur Virginie Colomb-Jung, cette fiche a pour objectif d’expliquer simplement la maladie et ses spécificités ; une maladie que l’on traite de mieux en mieux pour un plus grand confort de vie des personnes atteintes mais que l’on ne sait pas encore guérir.
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