{"id":1382,"date":"2016-10-26T14:12:37","date_gmt":"2016-10-26T19:12:37","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1382"},"modified":"2016-10-26T14:12:37","modified_gmt":"2016-10-26T19:12:37","slug":"amie","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2016\/10\/26\/amie\/","title":{"rendered":"INDIV\u00cdDUO COM LGMD: Amie"},"content":{"rendered":"

LGMD \"ENTREVISTA EM DESTAQUE\"<\/strong><\/p>\n

Nome<\/strong>: Amie\u00a0 Idade<\/strong>: 31 anos de idade\"lgmd2j-amie\"<\/a><\/p>\n

Pa\u00eds<\/strong>: Estados Unidos<\/p>\n

LGMD Sub-tipo<\/strong>: LGMD2J (Titinopatia)<\/p>\n

 <\/p>\n

Com que idade foi diagnosticado<\/strong>:<\/p>\n

Aos 31 anos de idade, foi-me diagnosticada LGMD2J - tamb\u00e9m conhecida como Titinopatia.<\/p>\n

Quais foram os seus primeiros sintomas<\/strong>:<\/p>\n

Sempre tive problemas com as minhas pernas e com o andar, mas sempre me disseram que era devido aos tend\u00f5es de Aquiles curtos. Depois de ter feito cirurgias para os alongar, os meus g\u00e9meos atrofiaram. Os meus m\u00fasculos centrais pareciam fracos e sempre pensei que fosse devido a duas cesarianas. S\u00f3 este ano \u00e9 que o meu corpo mudou drasticamente e come\u00e7ou a ficar fraco. N\u00e3o podia continuar a ignorar o facto e decidi procurar respostas.<\/p>\n

Tem outros familiares que sofrem de LGMD:<\/strong><\/p>\n

Nenhum familiar conhecido sofre desta doen\u00e7a.<\/p>\n

Quais s\u00e3o, na sua opini\u00e3o, os maiores desafios de viver com a LGMD?<\/strong>:<\/p>\n

A minha LGMD tem muitos desafios. Tenho dificuldades di\u00e1rias com as actividades di\u00e1rias \"normais\": atravessar uma sala, levantar-me de uma posi\u00e7\u00e3o sentada, subir um degrau ou uma colina, subir para um cami\u00e3o, curvar-me, equilibrar-me, etc. Por vezes, pode ser frustrante. Perco muita coisa por causa da dor constante que sinto. Se fizer demasiadas coisas (o que n\u00e3o \u00e9 preciso muito), fico de rastos durante dias. Tenho de escolher o que \u00e9 importante e o que n\u00e3o \u00e9. Tudo isto afecta tamb\u00e9m a vida da minha fam\u00edlia, pela qual carrego o fardo. A LGMD tirou-me definitivamente alguma da minha liberdade, o que \u00e9 dif\u00edcil de lidar, mas tento manter uma mentalidade positiva!<\/p>\n

Qual \u00e9 a sua maior realiza\u00e7\u00e3o<\/strong>:<\/p>\n

A minha maior realiza\u00e7\u00e3o \u00e9 ser m\u00e3e, esposa e irm\u00e3! Tenho duas filhas lindas, um marido fant\u00e1stico e a fam\u00edlia que mais me apoia. \u00c9 por causa deles que me mantenho positiva e \"luto como uma rapariga\"! Durante toda a minha vida, tudo o que sempre quis foi ser m\u00e3e e ter uma fam\u00edlia amorosa! Sou definitivamente aben\u00e7oada!<\/p>\n

Como \u00e9 que a LGMD o influenciou a tornar-se a pessoa que \u00e9 hoje?<\/strong><\/p>\n

Embora o meu diagn\u00f3stico seja relativamente recente, no fundo sempre soube que algo estava errado. Na verdade, auto-diagnostiquei-me com LGMD antes de obter um diagn\u00f3stico do meu neurologista. Por isso, quando os resultados dos testes chegaram, senti uma estranha sensa\u00e7\u00e3o de alegria. Finalmente tinha um diagn\u00f3stico! Sinto que me foi dada esta doen\u00e7a por uma raz\u00e3o para a qual ainda n\u00e3o encontrei uma resposta. Acredito verdadeiramente que tudo acontece por uma raz\u00e3o e que o momento certo \u00e9 tudo. A LGMD \u00e9 uma doen\u00e7a t\u00e3o rara que \u00e9 definitivamente desconhecida na minha \u00e1rea, por isso vou investigar o mais poss\u00edvel e defender esta doen\u00e7a junto do maior n\u00famero de pessoas poss\u00edvel. Sei que sou forte, apesar de os meus m\u00fasculos n\u00e3o o serem. Gosto das pequenas coisas da vida e vivo os momentos! Tamb\u00e9m procuro o lado positivo em todas as situa\u00e7\u00f5es. A vida \u00e9 demasiado curta para nos concentrarmos no negativo!<\/p>\n

\u00a0<\/strong><\/p>\n

O que quer que o mundo saiba sobre a LGMD<\/strong>:<\/p>\n

Quero que o mundo saiba que 1 em cada 43.000 pessoas tem Distrofia Muscular das Cinturas dos Membros. Infelizmente, n\u00e3o existe cura para esta doen\u00e7a. Devido \u00e0 sua raridade, h\u00e1 menos financiamento para a investiga\u00e7\u00e3o, o que me impede de obter uma cura. A LGMD pode entrar em qualquer fam\u00edlia e afecta vidas diariamente. Prevejo que esta doen\u00e7a acabar\u00e1 por me tirar a capacidade de andar, mas vou lutar contra ela enquanto puder!<\/p>\n

Se a sua LGMD pudesse ser \"curada\" amanh\u00e3, qual seria a primeira coisa que gostaria de fazer?<\/strong>:<\/p>\n

Por onde \u00e9 que eu come\u00e7o? Levaria as minhas filhas \u00e0 Disney World e depois faria caminhadas no Colorado! Subia um lance de escadas s\u00f3 porque podia! Tenho saudades das pequenas coisas que costumava fazer, como ir \u00e0s compras, dan\u00e7ar ou at\u00e9 tomar banho! N\u00e3o nos apercebemos da liberdade que perdemos at\u00e9 ela desaparecer!<\/p>\n

 <\/p>\n

Para ler mais \"LGMD Spotlight Interviews\" ou para se voluntariar para ser apresentado numa pr\u00f3xima entrevista, visite o nosso site em: https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"

LGMD \u201cSPOTLIGHT INTERVIEW\u201d Name:\u00a0 Amie\u00a0 Age: 31 yrs old Country: […]<\/p>","protected":false},"author":1,"featured_media":1381,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,66],"tags":[68,16],"class_list":["post-1382","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2j","tag-lgmd2j-titinopathy","tag-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Amie - LGMD Awareness Foundation<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"http:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2016\/10\/26\/amie\/\" \/>\n<meta property=\"og:locale\" content=\"pt_PT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Amie - 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