{"id":1765,"date":"2018-03-21T12:07:30","date_gmt":"2018-03-21T17:07:30","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1765"},"modified":"2018-03-21T12:07:30","modified_gmt":"2018-03-21T17:07:30","slug":"ralph-2","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2018\/03\/21\/ralph-2\/","title":{"rendered":"INDIVIDU AVEC LGMD : Ralph"},"content":{"rendered":"

LGMD \"SPOTLIGHT INTERVIEW\"<\/strong><\/p>\n

Nom<\/strong>: Ralph\u00a0\u00a0\u00a0 AGE<\/strong>: 58 ans \u00c2ge : 58 ans\"\"<\/a><\/p>\n

Pays<\/strong>: \u00c9tats-Unis<\/p>\n

LGMD Sous-type :\u00a0 <\/strong>LGMD2L \/ Anoctaminopathie<\/p>\n

 <\/p>\n

\u00c0 quel \u00e2ge avez-vous \u00e9t\u00e9 diagnostiqu\u00e9 ?<\/strong>:<\/p>\n

J'ai commenc\u00e9 \u00e0 ressentir des sympt\u00f4mes \u00e0 l'\u00e2ge de 47 ans, en 2006, et j'ai \u00e9t\u00e9 diagnostiqu\u00e9e en 2011 lorsque le LGMD2L a \u00e9t\u00e9 d\u00e9couvert.<\/p>\n

Quels ont \u00e9t\u00e9 vos premiers sympt\u00f4mes ?<\/strong>:<\/p>\n

Faiblesse des jambes. J'\u00e9tais un gros halt\u00e9rophile et, dans ma trentaine, je faisais du d\u00e9velopp\u00e9 couch\u00e9 avec un poids de 300 livres et du squat avec un poids de 400 livres. Mais j'ai ressenti une faiblesse dans ma jambe gauche et je suis all\u00e9 \u00e0 la salle de sport et j'ai essay\u00e9 de faire de la musculation avec une jambe \u00e0 la fois. Ma jambe droite \u00e9tait capable de presser 250 livres, mais ma jambe gauche \u00e9tait \u00e0 la tra\u00eene avec 150 livres.<\/p>\n

Avez-vous d'autres membres de votre famille atteints de LGMD ?<\/strong><\/p>\n

J'ai un fr\u00e8re confirm\u00e9 en 2L. Il y en a peut-\u00eatre d'autres, mais nous ne le savons pas encore.<\/p>\n

Quels sont, selon vous, les plus grands d\u00e9fis \u00e0 relever pour vivre avec le LGMD ?<\/strong>:<\/p>\n

Se d\u00e9placer dans toutes les situations. Les escaliers sont difficiles. Se lever d'une chaise est difficile. Marcher est possible mais devient de plus en plus difficile sur de longues distances. Et les chutes sont toujours possibles si les genoux fl\u00e9chissent, si l'on tr\u00e9buche ou si l'on glisse.<\/p>\n

Quelle est votre plus grande r\u00e9ussite ?<\/strong>:<\/p>\n

J'ai beaucoup travaill\u00e9 dans le domaine du handicap, notamment en si\u00e9geant au comit\u00e9 consultatif de la communaut\u00e9 nationale de MDA et en collaborant avec plusieurs autres organisations, tout en lan\u00e7ant la fondation LGMD2L.<\/p>\n

Comment le LGMD vous a-t-il influenc\u00e9 pour que vous deveniez la personne que vous \u00eates aujourd'hui ?<\/strong><\/p>\n

Lorsque vous regardez ce que je consid\u00e8re comme ma plus grande r\u00e9ussite, vous pouvez dire que le fait d'\u00eatre atteint du LGMD2L m'a amen\u00e9 \u00e0 travailler pour un grand nombre de personnes handicap\u00e9es de tous types.<\/p>\n

Que voulez-vous que le monde sache sur le LGMD ?<\/strong>:<\/p>\n

Nous nous rapprochons de plus en plus de traitements et de rem\u00e8des r\u00e9els et, si nous travaillons tous ensemble, cette \u00e9radication possible de la dystrophie musculaire aiderait tant de personnes et de familles, pr\u00e9sentes et futures.<\/p>\n

Si votre LGMD pouvait \u00eatre \"gu\u00e9rie\" demain, quelle serait la premi\u00e8re chose que vous souhaiteriez faire ?<\/strong>:<\/p>\n

Je recommencerais \u00e0 m'entra\u00eener comme dans ma jeunesse et je me concentrerais sur le d\u00e9veloppement d'une force et d'une sant\u00e9 r\u00e9elles tout en profitant des voyages et des beaut\u00e9s du monde.<\/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<\/a>\u00a0 <\/u><\/p>\n

* Merci de LIQUER, COMMENTER et PARTAGER cet article pour aider \u00e0 sensibiliser le public \u00e0 la LGMD !<\/p>","protected":false},"excerpt":{"rendered":"

LGMD \u201cSPOTLIGHT INTERVIEW\u201d Name:\u00a0 Ralph\u00a0\u00a0\u00a0 AGE: 58 Yrs. 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