{"id":9026,"date":"2024-03-01T17:56:42","date_gmt":"2024-03-01T17:56:42","guid":{"rendered":"https:\/\/www.rawoodfoundation.org\/?p=9026"},"modified":"2025-05-05T17:03:09","modified_gmt":"2025-05-05T17:03:09","slug":"vers-de-nouveaux-sommets-conquerir-le-mont-kilimandjaro-avec-lavp-d-et-sepanouir-au-dela-des-maladies-rares","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/fr\/2024\/03\/01\/scaling-new-heights-conquering-mount-kilimanjaro-with-avp-d-and-thriving-beyond-rare-disease\/","title":{"rendered":"De nouveaux sommets : La conqu\u00eate du Kilimandjaro avec l'AVP-D et l'\u00e9panouissement au-del\u00e0 des maladies rares"},"content":{"rendered":"

Randonner sur le Kilimandjaro est un r\u00eave que je caresse depuis de nombreuses ann\u00e9es et le dimanche 25 f\u00e9vrier \u00e0 7h18, il est devenu r\u00e9alit\u00e9. Malgr\u00e9 un vent de 40 mph et une temp\u00e9rature de -22 degr\u00e9s, j'ai atteint le pic Uhuru (5 895 m \/ 19 340 pieds), ce qui signifie que j'ai conquis l'un des 7 sommets du monde. Cela fait de moi la premi\u00e8re personne atteinte de diab\u00e8te de type 1 et d'AVP-D \u00e0 atteindre le sommet, mais j'esp\u00e8re que ce ne sera pas la derni\u00e8re !<\/p>\n\n\n\n

\"Personnes<\/figure>\n\n\n\n

On m'a diagnostiqu\u00e9 un diab\u00e8te de type 1 le 14 mars 2019. \u00c0 l'\u00e9poque, j'\u00e9tudiais la chimie \u00e0 l'universit\u00e9 de St Andrews tout en jouant au hockey international. J'avais pour objectif de me qualifier pour les Jeux du Commonwealth et les Jeux olympiques, mais en raison des effets d'un tel volume et d'une telle intensit\u00e9 d'entra\u00eenement, j'ai d\u00e9cid\u00e9 qu'il \u00e9tait trop difficile d'essayer de g\u00e9rer mon diab\u00e8te en pratiquant un sport de haut niveau. Mentalement et physiquement, cela a provoqu\u00e9 une onde de choc dans ma vie, et j'ai eu beaucoup de mal \u00e0 envisager ce \u00e0 quoi la vie ressemblerait d\u00e9sormais et comment je pourrais retrouver mon ind\u00e9pendance, ma confiance et ma joie de vivre. C'est ainsi que la randonn\u00e9e est entr\u00e9e dans ma vie.<\/p>\n\n\n\n

C'est en 2020, au milieu de la fermeture de COVID, que je me suis achet\u00e9 un camping-car pour parcourir le Royaume-Uni. J'ai commenc\u00e9 \u00e0 planifier des voyages autour des montagnes que je pouvais arpenter : Snowdon, Scafell Pike, Ben Nevis, Carrauntoohil et Slieve Donard. Je me suis \u00e9galement aventur\u00e9 plus loin, en France, o\u00f9 j'ai explor\u00e9 le Pic du Midi, le Mont Ventoux et le Mont Pelat. Une fois mes aventures en camping-car termin\u00e9es, je me suis sentie pr\u00eate \u00e0 relever un plus grand d\u00e9fi et le Kilimandjaro est imm\u00e9diatement devenu mon objectif ! Le fait d'\u00eatre atteint d'une maladie chronique peut souvent vous amener \u00e0 remettre en question votre capacit\u00e9 \u00e0 relever des d\u00e9fis que d'autres n'appr\u00e9henderaient pas autant. Cependant, je ne voulais pas que la peur m'emp\u00eache de profiter des exp\u00e9riences que la vie a \u00e0 offrir.<\/p>\n\n\n\n

Apr\u00e8s m'\u00eatre inscrite \u00e0 l'exp\u00e9dition, je voulais planifier autant que possible et \u00eatre organis\u00e9e dans la gestion de chaque maladie. Je savais qu'il y avait des facteurs que je pouvais contr\u00f4ler pour assurer ma s\u00e9curit\u00e9, tant du point de vue du diab\u00e8te que de l'AVP-D. Par exemple, mon insuline g\u00e8lerait \u00e0 des temp\u00e9ratures plus fra\u00eeches et les piles de mon lecteur de glyc\u00e9mie se d\u00e9chargeraient. En gardant cela \u00e0 l'esprit, j'ai pr\u00e9vu de garder mes stylos et mon lecteur de glyc\u00e9mie pr\u00e8s de ma peau en permanence, en les gardant suffisamment au chaud. Pour mon AVP-D, j'ai achet\u00e9 des bandelettes de test urinaire de sodium qui me donneraient une vague id\u00e9e de mon taux de sodium.<\/p>\n\n\n\n

\"Personnes<\/figure>\n\n\n\n

Il y a des aspects auxquels je ne pouvais pas me pr\u00e9parer et que j'ai d\u00fb d\u00e9couvrir pendant le trek. En altitude, j'ai constat\u00e9 que mon insuline n'\u00e9tait pas aussi efficace et j'ai donc augment\u00e9 mon niveau de base pour la dur\u00e9e du voyage. Le contr\u00f4le de mon taux de sodium \u00e9tait beaucoup plus difficile et l'hyponatr\u00e9mie est un effet secondaire courant de mon traitement \u00e0 la Desmopressine. Je me suis donc assur\u00e9 d'avoir une journ\u00e9e de rupture juste avant de commencer la randonn\u00e9e et j'ai \u00e9galement veill\u00e9 \u00e0 prendre des \u00e9lectrolytes tous les jours. Lorsque j'ai commenc\u00e9 \u00e0 ressentir les sympt\u00f4mes d'un manque de sodium (crampes et faiblesse), j'ai veill\u00e9 \u00e0 sauter une dose et \u00e0 boire jusqu'\u00e0 plus soif. Si les lecteurs de glyc\u00e9mie sont tr\u00e8s r\u00e9pandus et m'aident \u00e0 bien g\u00e9rer mon diab\u00e8te, il n'existe actuellement pas de lecteur de glyc\u00e9mie \u00e0 domicile, ce qui complique la t\u00e2che pour rester en s\u00e9curit\u00e9. La Fondation Raymond A Wood est en train de mettre au point un lecteur de glyc\u00e9mie qui serait d'une grande utilit\u00e9 pour la communaut\u00e9 AVP-D.<\/p>\n\n\n\n

Le d\u00e9fi que repr\u00e9sente le Kilimandjaro ne doit pas \u00eatre sous-estim\u00e9, surtout si l'on suit l'itin\u00e9raire que nous avons emprunt\u00e9. Les journ\u00e9es ont \u00e9t\u00e9 longues et physiques, avec beaucoup de d\u00e9nivel\u00e9s et de descentes. Le premier jour, nous avons parcouru 4 km depuis Moshi jusqu'\u00e0 Londorosi Gate, o\u00f9 nous nous sommes inscrits, avons pes\u00e9 nos sacs et avons rencontr\u00e9 notre \u00e9quipe de porteurs. Nous avons ensuite continu\u00e9 \u00e0 rouler jusqu'au site de pique-nique de Morum, o\u00f9 nous avons commenc\u00e9 \u00e0 marcher jusqu'au camp Shira 1. Le deuxi\u00e8me jour, nous avons parcouru 10 km \u00e0 travers un paysage de lande pittoresque, de Shira 1 au camp Shira 2. Le troisi\u00e8me jour, nous avons parcouru 11 km en direction du sud-est, vers la tour de lave, une formation rocheuse volcanique de 300 pieds de haut. C'est un excellent moyen d'acclimatation, qui nous permet d'atteindre 3 600 m d'altitude. Le quatri\u00e8me jour, nous avons parcouru 6 km en escaladant le mur de Baranco avant de nous diriger vers la vall\u00e9e de Karanga et de planter nos tentes au camp de Karanga. Le cinqui\u00e8me jour, nous avons parcouru 4 km en quittant Karanga et en traversant le d\u00e9sert alpin jusqu'au camp Barafu (camp de base pour la nuit du sommet). Le jour 6 a \u00e9t\u00e9 consacr\u00e9 \u00e0 la tentative d'ascension du sommet. Parti \u00e0 1h30, j'ai atteint le sommet (Uhuru Peak) \u00e0 7h15. Apr\u00e8s \u00eatre redescendu au camp Barafu et avoir fait une courte pause, nous sommes descendus au camp d'altitude. Cela repr\u00e9sentait un total de 14 km. Le 7e jour, nous avons descendu 13,5 km jusqu'au camp Mweka, puis jusqu'\u00e0 la porte Mweka \u00e0 travers la for\u00eat tropicale. Le sentier \u00e9tait tr\u00e8s rocailleux et escarp\u00e9, ce qui a mis nos genoux \u00e0 rude \u00e9preuve.<\/p>\n\n\n\n

La pratique d'acclimatation \u00e0 partir du troisi\u00e8me jour a consist\u00e9 \u00e0 faire des randonn\u00e9es \u00e0 des altitudes plus \u00e9lev\u00e9es et \u00e0 camper l\u00e9g\u00e8rement plus bas pour aider nos corps \u00e0 s'adapter aux conditions. Bien que la randonn\u00e9e n'ait pas \u00e9t\u00e9 trop technique, la section du mur de Baranco n\u00e9cessitait de grimper sur des parois rocheuses abruptes et la nuit du sommet impliquait de marcher dans de la glace et de la neige \u00e9paisses. J'ai constat\u00e9 que mon taux de glucose variait consid\u00e9rablement en fonction du rythme et de l'intensit\u00e9 physique de la journ\u00e9e. Lorsque je marchais progressivement en mont\u00e9e, mes niveaux descendaient doucement, tandis que la pouss\u00e9e dure et raide de la nuit du sommet faisait grimper mes niveaux. Cela m'a certainement permis de rester sur mes gardes !<\/p>\n\n\n\n

\"Personne<\/figure>\n\n\n
\n\n

M\u00eame si tout le monde ne r\u00eave pas de faire une randonn\u00e9e sur le Kilimandjaro, j'esp\u00e8re que cela montre que le fait d'\u00eatre atteint d'une maladie chronique ne doit pas limiter les possibilit\u00e9s de se d\u00e9passer mentalement et physiquement. Ce voyage m'a permis d'apprendre beaucoup de choses sur moi-m\u00eame et a vraiment \u00e9t\u00e9 la meilleure exp\u00e9rience de ma vie. Je me suis fait de nouveaux amis, j'ai d\u00e9couvert une culture et un mode de vie totalement diff\u00e9rents, j'ai vu des choses incroyables, je suis sortie de ma zone de confort et j'ai r\u00e9alis\u00e9 des choses dont je ne me serais jamais crue capable. La r\u00e9silience mentale est quelque chose que vous \u00eates oblig\u00e9 de d\u00e9velopper lorsque vous vivez avec une maladie qui affecte votre vie quotidienne et je pense que cela m'a permis d'\u00eatre bien \u00e9quip\u00e9 pour affronter l'aspect mental de ce d\u00e9fi.<\/p>\n\n<\/div>\n\n\n

Ayant atteint mon objectif, je demande \u00e0 tous ceux qui se sentent inspir\u00e9s par mon d\u00e9fi de faire un don \u00e0 l'une de ces causes extraordinaires : Fondation Raymond A. Wood (AVP-D<\/a>), JDRF UK (diab\u00e8te de type 1), The Pituitary Foundation (AVP-D). <\/p>\n\n\n\n

Je vous prie d'agr\u00e9er, Monsieur le Pr\u00e9sident, l'expression de mes sentiments distingu\u00e9s,<\/p>\n\n\n\n

Amy Cairns <\/p>\n\n\n

\n\nSoutenir le d\u00e9veloppement des compteurs de sodium <\/a>\n\n<\/div>","protected":false},"excerpt":{"rendered":"

Randonner sur le Kilimandjaro est un r\u00eave que j'ai depuis de nombreuses ann\u00e9es et le dimanche 25 ... Lire plus<\/a><\/p>","protected":false},"author":4,"featured_media":9029,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[47,30,43],"tags":[46,49],"class_list":["post-9026","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-di","category-rawf-news","category-patient-stories","tag-avp-d","tag-sodium-meter","generate-columns","tablet-grid-50","mobile-grid-100","grid-parent","grid-33","no-featured-image-padding"],"acf":[],"yoast_head":"\nScaling New Heights: Conquering Mount Kilimanjaro with AVP-D and Thriving Beyond Rare Disease - Raymond A. 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