\u00c0 QUEL \u00c2GE AVEZ-VOUS \u00c9T\u00c9 DIAGNOSTIQU\u00c9 ?<\/strong>:<\/p>\nJ'ai \u00e9t\u00e9 initialement diagnostiqu\u00e9 avec une forme non sp\u00e9cifi\u00e9e de dystrophie musculaire \u00e0 l'\u00e2ge de 25 ans. J'ai re\u00e7u la confirmation de mon diagnostic de LGMD2A \u00e0 l'\u00e2ge de 43 ans.<\/p>\n
QUELS ONT \u00c9T\u00c9 VOS PREMIERS SYMPT\u00d4MES :<\/strong><\/p>\n\u00c0 la fin de mon adolescence, j'ai commenc\u00e9 \u00e0 me dandiner maladroitement en marchant et, au d\u00e9but de la vingtaine, j'ai commenc\u00e9 \u00e0 boiter.<\/p>\n
AVEZ-VOUS D'AUTRES MEMBRES DE VOTRE FAMILLE QUI SONT ATTEINTS DE LA LGMD : <\/strong><\/p>\nOui, l'un des membres de la fratrie est atteint de LGMD2A, mais pas l'autre.<\/p>\n
QUEL EST, SELON VOUS, LE PLUS GRAND D\u00c9FI \u00c0 RELEVER POUR VIVRE AVEC UNE LGMD ?<\/strong>:<\/p>\nPour \u00eatre franc, le pire est de devoir se rendre dans les toilettes publiques, car le transfert depuis et vers un fauteuil roulant est physiquement difficile et les toilettes ne sont pas toujours am\u00e9nag\u00e9es de mani\u00e8re ad\u00e9quate, de sorte que je suis toujours inquiet de pouvoir boire de l'eau ou du caf\u00e9 pendant que je suis dehors. J'ai parfois l'impression que ma vie tourne autour de la gestion des fluides !<\/p>\n
QUELLE EST VOTRE PLUS GRANDE R\u00c9ALISATION ?<\/strong>:<\/p>\nSur le plan professionnel, ma plus grande r\u00e9alisation est ma participation \u00e0 la cr\u00e9ation et \u00e0 la gestion de la Coalition to Cure Calpain 3 (C3), un groupe \u00e0 but non lucratif dont l'objectif est de financer des recherches \u00e0 fort potentiel pour gu\u00e9rir la LGMD2A (\u00e9galement connue sous le nom de calpa\u00efnopathie) et d'\u00e9duquer la communaut\u00e9 mondiale sur la maladie.<\/p>\n
Personnellement, ma derni\u00e8re r\u00e9ussite est d'avoir r\u00e9solu un mini-mot crois\u00e9 du New York Times en 15 secondes,
\nCOMMENT LA LGMD VOUS A-T-ELLE INFLUENC\u00c9 POUR DEVENIR LA PERSONNE QUE VOUS \u00caTES AUJOURD'HUI :<\/strong><\/p>\nD'un autre c\u00f4t\u00e9, cela m'a rendu plus empathique et m'a donn\u00e9 l'occasion de montrer \u00e0 mes enfants qu'il est important d'agir lorsque l'on est frustr\u00e9 par l'\u00e9tat des choses. Ne vous plaignez pas, soyez un agent du changement.<\/p>\n
D'un autre c\u00f4t\u00e9, la maladie m'a oblig\u00e9 \u00e0 adapter ma vie quotidienne \u00e0 l'aggravation de ma mobilit\u00e9, et bien que je profite au maximum de ma vie et que je sois g\u00e9n\u00e9ralement heureux et productif, elle pr\u00e9sente certainement des d\u00e9fis, et cela peut devenir fatigant sur le plan physique et \u00e9motionnel.<\/p>\n
QUE VOULEZ-VOUS QUE LE MONDE SACHE SUR LA LGMD ?<\/strong>:<\/p>\nNous avons besoin de plus de fonds pour la recherche et d'un plus grand nombre de scientifiques engag\u00e9s dans la recherche d'un traitement ou d'un rem\u00e8de.<\/p>\n
SI VOTRE LGMD POUVAIT \u00caTRE \"GU\u00c9RIE\" DEMAIN, QUELLE SERAIT LA PREMI\u00c8RE CHOSE QUE VOUS VOUDRIEZ FAIRE ?<\/strong>:<\/p>\nFaire du v\u00e9lo (de pr\u00e9f\u00e9rence un Schwinn rose avec un panier sur le guidon et un thermos de caf\u00e9) jusqu'\u00e0 la plage et marcher le long de la jet\u00e9e avec ma famille.<\/p>\n
<\/p>\n
Pour lire d'autres \"LGMD Spotlight Interviews\" ou pour vous porter volontaire pour une prochaine interview, veuillez consulter notre site web \u00e0 l'adresse suivante : https:\/\/www.lgmd-info.org\/spotlight-interviews.<\/p>","protected":false},"excerpt":{"rendered":"
LGMD \u201cSPOTLIGHT INTERVIEW\u201d NAME:\u00a0 Michele \u00a0\u00a0AGE: 52 Yrs. Old […]<\/p>","protected":false},"author":1,"featured_media":1340,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[15,16],"class_list":["post-1341","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-lgmd2a","tag-united-states"],"acf":[],"yoast_head":"\n
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<\/a><\/p>\n