Erdheim-Chester Disease (ECD) Community

Meet, discuss & support other patients or families living with Erdheim-Chester Disease (ECD). Contribute to topics, or just share what's on your mind

JFDeleplanque
moderator

ECD et atteintes rénales

Bonjour,
j'ai la maladie d'erdheim chester, traité par Zelboraf (Vemurafenib) depuis 25 mois.Je suis aussi diabetique depuis 30 ans car j'ai une insuffisance en hormones hypophysaires.
J'ai déjà un stent sur l'artere renale gauche, mon rein gauche n'est quasiment plus fonctionnel. et je dois subir prochainement un stenting de l'artere renale droite pour preserver mon rein droit.
J'ai une peur folle de la dialyse, synonyme pour moi de fin de vie, de souffrance.
Comment vivez vous les atteintes rénales ? que faites vous pour préserver vos reins ?

Kathy_Brewer
moderator

Dear Jean-Francois,
It is understandable that you would be worried about your kidneys given the situation. However, it also sounds like you are doing the right things. You have a knowledgeable ECD doctor treating you, you are on one of the newest and most hopeful treatments, and you are doing what is necessary to relieve the pressure from your kidneys. We have other patients in the ECD Global Alliance who also suffer from kidney issues related to ECD and are doing the same things you are doing. By taking care of yourself, as you are doing, you will stand the best chance of your kidneys continuing to function. I'll be thinking of you. Please keep posting and let us know how you are doing. - Kathy