{"id":23661,"date":"2022-02-03T10:16:28","date_gmt":"2022-02-03T09:16:28","guid":{"rendered":"https:\/\/alan.lu\/?page_id=23661"},"modified":"2022-02-03T10:16:29","modified_gmt":"2022-02-03T09:16:29","slug":"temoignages-hannah-s","status":"publish","type":"page","link":"https:\/\/alan.lu\/fr\/temoignages\/temoignages-hannah-s\/","title":{"rendered":"T\u00e9moignages"},"content":{"rendered":"

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Hannah<\/h2>\n

[\/vc_column_text][vc_column_text]42 ans, vit avec une neurosarko\u00efdose<\/strong>[\/vc_column_text][vc_empty_space height=”35px”][vc_column_text]\u00ab\u00a0Bonjour ! Je m’appelle Hannah Siedek. J’ai 42 ans. Je suis pacs\u00e9e et maman de deux enfants\u00a0: Hugo et Sophia, 4 ans et 8 mois.<\/p>\n

Je suis atteinte d’une maladie rare appel\u00e9e Neurosarco\u00efdose, qui est en gros une m\u00e9ningite chronique. J’\u00e9tais en bonne sant\u00e9, sportive et \u00e9nergique, jusqu’en 2012, quand j\u2019ai eu de forts vertiges, un nerf optique entrav\u00e9 \u00e0 l’\u0153il gauche, des acouph\u00e8nes et une tr\u00e8s forte fatigue. La maladie est apparue du jour au lendemain et j’ai pass\u00e9 une p\u00e9riode de 8 mois \u00e0 visiter l’h\u00f4pital de Francfort car c’\u00e9tait compliqu\u00e9 de trouver un diagnostic. Fin 2013, j’ai eu un l\u00e9ger accident vasculaire c\u00e9r\u00e9bral (AVC) et les m\u00e9decins m\u2019ont sugg\u00e9r\u00e9 de faire une biopsie, c’est-\u00e0-dire d\u2019ouvrir mon cr\u00e2ne pour analyser l\u2019inflammation de mes m\u00e9ninges. Avant, j’avais h\u00e9sit\u00e9 de donner mon accord, car je ne me sentais pas assez malade pour justifier l’ouverture de mon cr\u00e2ne. Pourtant, apr\u00e8s l’AVC, j’ai ressenti un besoin de comprendre ce qui m\u2019arrivait. Aussi, parce que l’homme de ma vie, Kaspar, qui a pass\u00e9 des jours \u00e0 travailler depuis ma chambre d’h\u00f4pital, avait besoin d’un peu d\u2019espoir qu’\u00e0 un moment donn\u00e9, sa petite amie\/femme serait de nouveau en bonne sant\u00e9.<\/p>\n

Sur la base des r\u00e9sultats de la biopsie, un neurologue luxembourgeois au CHL a pu diagnostiquer la neurosarko\u00efdose et commencer mon traitement \u00e0 base de cortisone et de d\u2019autres m\u00e9dicaments (\u00ab\u00a0enhancers\u00a0\u00bb).<\/p>\n

Mais, je ne veux pas vous parler de ma maladie, mais plut\u00f4t de l’impact qu’elle a eu sur moi. \u00c7a semble bizarre, mais je suis presque heureuse que ce soit arriv\u00e9. Avant, je travaillais tr\u00e8s (!) dur, je n\u00e9gligeais mes amis et ma famille. Je suppose que j’avais besoin de cette gifle pour d\u00e9finir mes priorit\u00e9s.<\/p>\n

Avoir une maladie rare est effrayant, car les m\u00e9decins ne savent pas \u00e0 100% comment vous traiter. En plus, il y a peu, ou pas, de cas de r\u00e9f\u00e9rence avec lesquels vous pouvez vous comparer.<\/p>\n

Il y a toujours la question \u00ab\u00a0pourquoi moi\u00a0?\u00a0\u00bb et m\u00eame si je sais que c’est une question stupide, je la pose encore aujourd’hui. Pendant un certain temps, j’ai eu l’impression d’\u00eatre puni pour quelque chose que j’avais fait. \u00c9videmment, c’est n’importe quoi, mais c’est difficile d’accepter que la maladie \u00ab soit tomb\u00e9e \u00bb sur moi\u2026 et pas sur vous.<\/p>\n

Aujourd’hui, j’ai la chance de pouvoir mener une vie normale. Je dois encore faire mon examen IRM annuel et prendre ma pilule de cortisone de 5 mg tous les matins, mais ce sont les seules choses qui me rappellent que je suis atteinte d\u2019une neurosarko\u00efdose.<\/p>\n

Gr\u00e2ce \u00e0 mes m\u00e9decins, au Luxembourg et \u00e0 Paris, j’ai pu avoir deux enfants avec Kaspar et nous vivons une vie tr\u00e8s, tr\u00e8s normale au Luxembourg, \u00e0 part les nuits sans sommeil, les petits d\u00e9jeuners tr\u00e8s t\u00f4t et un salon en d\u00e9sordre, mais ces choses ne sont pas dus \u00e0 ma maladie mais plut\u00f4t \u00e0 mes deux petits bouts de chou.\u00a0\u00bb[\/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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