{"id":393,"date":"2021-07-07T07:43:38","date_gmt":"2021-07-07T05:43:38","guid":{"rendered":"https:\/\/www.amyloidosisalliance.org\/events\/world-amyloidosis-day\/testimonials\/ma-vie-avec-une-amylose-aa\/"},"modified":"2021-07-07T07:43:38","modified_gmt":"2021-07-07T05:43:38","slug":"ma-vie-avec-une-amylose-aa","status":"publish","type":"aa_testimony","link":"https:\/\/www.amyloidosisalliance.org\/fr\/events\/world-amyloidosis-day\/testimonials\/ma-vie-avec-une-amylose-aa\/","title":{"rendered":"Ma vie avec une amylose AA"},"content":{"rendered":"

21 ans, 1984, c\u2019est l\u2019age ou tout bascule. Diagnostic d\u2019une maladie de Fabry, h\u00e9r\u00e9ditaire. Douleurs des mains, des pieds, vomissements, fatigue, incompr\u00e9hension de mon \u00e9tat par les m\u00e9decins et je vais aux urgences de l\u2019h\u00f4pital St Antoine \u00e0 Paris. Suivie \u00e0 Necker, avec une CRP , prot\u00e9ine C r\u00e9active toujours \u00e9lev\u00e9e, biopsie r\u00e9nale en 2015, diagnostic d\u2019Amylose AA. Actuellement je suis sous Colchicine et kineret, et suivi par le Pr Grateau \u00e0 l\u2019h\u00f4pital Tenon. Depuis toute petite la maladie a fait et fait toujours partie de ma vie, je l\u2019accepte et je vis avec.
Mon histoire qui ressemble certainement \u00e0 beaucoup d\u2019entre elles, car avant d\u2019\u00eatre comprise et entendue, il y a des ann\u00e9es v\u00e9cues sans r\u00e9ponse.
Pour moi le diagnostic de l\u2019amylose a \u00e9t\u00e9 un soulagement, car jusque-l\u00e0 toutes mes douleurs \u00e9taient li\u00e9es \u00e0 la maladie de Fabry. La maladie de Fabry n\u2019engendre pas de perte de prot\u00e9ine, mais les m\u00e9decins et le r\u00e9sultat des analyses et une CRP toujours \u00e9lev\u00e9e, demandent cette biopsie. Et l\u00e0 on me dit, c\u2019est une maladie inflammatoire. Et l\u00e0 on comprend pourquoi notre corps r\u00e9agit de telle fa\u00e7on, essouffl\u00e9, fatigu\u00e9, lente \u00e0 faire les choses, ce n\u2019est pas l\u2019envie qui manque c\u2019est l\u2019\u00e9nergie pour effectuer les petites choses du quotidien.
Voil\u00e0 ma grande histoire, j\u2019esp\u00e8re qu\u2019elle aidera d\u2019autres personnes qui vivent avec des soucis de sant\u00e9 sans savoir quoi faire et o\u00f9 aller.<\/p>\n

Ma vie avec une amylose AA – Isaura – France<\/p>\n","protected":false},"excerpt":{"rendered":"

21 ans, 1984, c\u2019est l\u2019\u00e2ge ou tout bascule. Diagnostic d\u2019une maladie de Fabry, h\u00e9r\u00e9ditaire.<\/p>\n","protected":false},"featured_media":394,"template":"","class_list":["post-393","aa_testimony","type-aa_testimony","status-publish","has-post-thumbnail","hentry"],"yoast_head":"\nMa vie avec une amylose AA - Amyloidosis Alliance<\/title>\n<meta name=\"description\" content=\"21 ans, 1984, c\u2019est l\u2019\u00e2ge ou tout bascule. 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