INFOmaladies

Dans mon cas (anémie de Blackfan Diamond) il n'existe aucun traitement (hormis une greffe de moelle qui n'est pas envisageable pour moi), je fais des transfusions toutes les 3 semaines pour compenser le fait que je ne fabrique pas de globules rouges et je prends du Ferriprox pour la surcharge en fer, c'est un médicament peu efficace.
Cependant il existe un médicament qui doit être pris une fois par jour et qui semblerait être efficace, mais il n'est pas encore commercialisé en France (il existe en Suisse et USA) car celle-ci n'a pas encore eu l'autorisation de le faire.

Alors comment réagir quand on sait qu'il existe un traitement pour vous soulager mais qu'il n'est pas encore possible de l'avoir?

Je précise que ça fait un an que les médecins me parlent de ce traitement et qu'ils ne savent pas quand il sera commercialé.

Dernière modification par jennifer (06-12-2006 14:48:17)

La greffe n'est pas possible car pour l'instant je n'ai pas de donneur compatible dans ma famille et les médecins jugent mon état de santé bon. A vrai dire cela fait quelques années qu'on ne parle plus de greffe pour moi, les médecins en avaient discuter avec mes parents lorsque j'étais enfant, et on leur avait dit que c'était trop contraignant, que les traitements sont plus lourd que ceux que j'ai actuellement, et qu'il y a un fort risque de rejet. Depuis j'en ai jamais reparler avec un médecin.

Le traitement s'appelle Exjade, je n'arrive pas à trouver beaucoup d'informations sur le net concernant ce médicament et les médecins qui me suivent n'en savent pas plus que moi.

Merci

Bonne soirée

Merci

Quand j'aurai plus d'informations, je n'hésiterai pas à vous en faire part.

Je dois aller à l'hôpital vendredi, je vais peut-être avoir de bonnes nouvelles.

Je te tiens au courant

Bonne journée

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