{"id":22478,"date":"2021-02-24T17:00:52","date_gmt":"2021-02-24T16:00:52","guid":{"rendered":"https:\/\/alan.lu\/?page_id=22478"},"modified":"2021-02-24T17:00:52","modified_gmt":"2021-02-24T16:00:52","slug":"temoignages-jean-claude","status":"publish","type":"page","link":"https:\/\/alan.lu\/fr\/temoignages\/temoignages-jean-claude\/","title":{"rendered":"T\u00e9moignages"},"content":{"rendered":"

[vc_row content_width=”grid” css=”.vc_custom_1492696696810{padding-top: 130px !important;padding-bottom: 90px !important;}”][vc_column offset=”vc_col-lg-6 vc_col-md-6 vc_col-xs-12″][vc_single_image image=”22482″ img_size=”full”][vc_empty_space height=”35px”][\/vc_column][vc_column offset=”vc_col-lg-6 vc_col-md-6 vc_col-xs-12″]

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Jean-Claude<\/h2>\n

[\/vc_column_text][vc_column_text]53 ans, vit avec la maladie de MoyaMoya<\/strong>[\/vc_column_text][vc_empty_space height=”35px”][vc_column_text]”Je m’appelle Jean-Claude, j’ai 53 ans, mari\u00e9. Et j’ai deux filles avec Fiona,\u00a0 mon \u00e9pouse.<\/p>\n

Un matin, fin mars il y a dix ans, mon \u00e9pouse a insist\u00e9 que j’avais fait un accident vasculaire c\u00e9r\u00e9bral (AVC) durant la nuit. Pour elle, les deux moiti\u00e9s de mon visage \u00e9taient d\u00e9synchronis\u00e9es. Je m’\u00e9tais senti un peu \u00e9tourdi au r\u00e9veil, mais \u00e9tant diab\u00e9tique depuis l’adolescence, je pensais \u00e0 une hypoglyc\u00e9mie non d\u00e9tect\u00e9e.<\/p>\n

Cependant, \u00e0 l’h\u00f4pital, nous recevions la confirmation que j’avais bien fait un mini AVC. On mentionnait le mot \u00abMoyaMoya\u00bb pour la premi\u00e8re fois \u00e0 mon \u00e9pouse.<\/p>\n

Deux jours apr\u00e8s mon retour \u00e0 la maison, j’ai eu mon deuxi\u00e8me AVC. Cette fois j’ai ressenti une douleur du c\u00f4t\u00e9 gauche du cerveau. Apr\u00e8s, j’\u00e9tais paralys\u00e9 du c\u00f4t\u00e9 droit et j’avais des difficult\u00e9s \u00e0 parler.<\/p>\n

Je passais 5 semaines \u00e0 l’h\u00f4pital, suivi de quelques mois de r\u00e9\u00e9ducation. Mon s\u00e9jour prolong\u00e9 avait permis aux neurologues de confirmer l’hypoth\u00e8se de MoyaMoya.<\/p>\n

MoyaMoya est une maladie neurologique rare, o\u00f9 les vaisseaux sanguins dans le cerveau se ferment. Le cerveau compense cela en d\u00e9veloppant une multitude de vaisseaux sanguins microscopiques, invisibles sur un scan normal. Ces vaisseaux sont cependant sujets \u00e0 des h\u00e9morragies c\u00e9r\u00e9brales et donc \u00e0 des AVC.<\/p>\n

J’ai subi ma premi\u00e8re op\u00e9ration durant la derni\u00e8re semaine de juin. Appel\u00e9e \u00ab\u00a0Burr holes\u00a0, elle consistait \u00e0 percer une multitude de petits trous dans mon cr\u00e2ne, de sorte que les vaisseaux sanguins sous le cuir chevelu puissent s\u2019infiltrer lentement \u00e0 l’int\u00e9rieur de mon cerveau pour compenser la circulation sanguine r\u00e9duite.<\/p>\n

Deux semaines plus tard, j’ai eu mon deuxi\u00e8me mini-AVC, cette fois du c\u00f4t\u00e9 droit du cerveau. Comme en mars, trois jours \u00e0 l’h\u00f4pital pour observation. Cela avait prouv\u00e9 que \u00ab\u00a0mon\u00a0\u00bb MoyaMoya touchait les deux c\u00f4t\u00e9s du cerveau, contrairement \u00e0 ce qu\u2019on pensait au d\u00e9but. J’ai donc subi mi-septembre de la m\u00eame ann\u00e9e la deuxi\u00e8me op\u00e9ration \u00ab\u00a0Burr holes\u00a0\u00bb, mais cette fois-ci sur le c\u00f4t\u00e9 droit du crane.<\/p>\n

Depuis, je n’ai plus la m\u00eame (disons) \u00abendurance d’utilisation du cerveau\u00bb, je ressens en permanence une fatigue l\u00e9g\u00e8re \u00e0 forte (\u00c0 cause du MoyaMoya, de mes trois AVC, ou des deux, je ne pourrais le dire) et j\u2019ai des difficult\u00e9s avec l\u2019\u00e9criture. Mais j’ai r\u00e9ussi \u00e0 progresser professionnellement, quoiqu\u2019avec des accommodements.<\/p>\n

J’ai rejoint ALAN car je pense qu’il est n\u00e9cessaire de se regrouper et de montrer que les maladies rares peuvent \u00eatre \u00abd\u00e9couvertes\u00bb \u00e0 tout \u00e2ge, sous toutes les formes, visibles de l’ext\u00e9rieur ou non. Et il faut pouvoir en parler ouvertement, sans crainte de rejet ou de discrimination.”[\/vc_column_text]\t\t<\/div>\n\t<\/div>\n\t<\/div><\/div>[\/vc_column][\/vc_row][vc_row content_width=”grid” css=”.vc_custom_1596118384380{padding-top: 36px !important;padding-bottom: 41px !important;background-color: #ee3f75 !important;}”][vc_column css=”.vc_custom_1492609383973{padding-top: 2px !important;}”]\t

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Contactez-nous en cas de questions ou besoin d\u2019assistance<\/span><\/h2>\n\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\n\t\t\t\t\t\t\t\t\t
\n\t\t\t\t\t\t\tContact<\/span> <\/a>\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t<\/div>\n[\/vc_column][\/vc_row]<\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"

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