{"id":1378,"date":"2016-10-11T11:29:46","date_gmt":"2016-10-11T16:29:46","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1378"},"modified":"2016-10-11T11:29:46","modified_gmt":"2016-10-11T16:29:46","slug":"anna","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2016\/10\/11\/anna\/","title":{"rendered":"INDIV\u00cdDUO COM LGMD: Anna"},"content":{"rendered":"

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

Nome<\/strong>: Anna \u00a0\u00a0Idade<\/strong>: 36 anos de idade\"lgmd2i-anna\"<\/a><\/p>\n

Pa\u00eds<\/strong>: Canad\u00e1<\/p>\n

LGMD Sub-tipo<\/strong>: LGMD2I<\/p>\n

 <\/p>\n

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

Foi-me inicialmente diagnosticada uma \"miopatia muscular n\u00e3o espec\u00edfica\" quando era uma crian\u00e7a pequena (algures na escola prim\u00e1ria). Mais tarde, quando tinha 26 anos, foi-me dado um \"diagn\u00f3stico provis\u00f3rio\" de LGMD. Finalmente, aos 36 anos, foi-me formalmente \/ clinicamente diagnosticada a LGMD 2I atrav\u00e9s de testes gen\u00e9ticos.<\/p>\n

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

N\u00e3o sei ao certo quais foram os meus primeiros sintomas porque, apesar de ter esta doen\u00e7a desde que nasci, os meus pais nunca falaram comigo sobre ela. Acharam que, como os meus sintomas n\u00e3o tinham impacto m\u00e9dico na minha vida, n\u00e3o havia necessidade de pensar neles. Olhando para tr\u00e1s, se tivesse de adivinhar, os meus primeiros sintomas (de que me lembro) eram andar com os dedos dos p\u00e9s e dores nas pernas. Tamb\u00e9m me lembro de n\u00e3o conseguir participar facilmente em algumas actividades de gin\u00e1stica, como corrida de fundo e gin\u00e1stica.<\/p>\n

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

Tenho tr\u00eas irm\u00e3os. \u00c9 interessante que os dois irm\u00e3os com idade mais pr\u00f3xima da minha s\u00e3o afectados pela LGMD, mas o meu irm\u00e3o mais novo (que \u00e9 sete anos mais novo) n\u00e3o \u00e9 afetado de todo e, de facto, \u00e9 extremamente atl\u00e9tico.<\/p>\n

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

Para mim, o primeiro grande desafio \u00e9 a constante mudan\u00e7a das necessidades desta doen\u00e7a - por vezes \u00e9 dif\u00edcil acompanhar! Por exemplo, habituamo-nos a fazer uma determinada tarefa de uma forma e, de repente, um dia, j\u00e1 n\u00e3o a podemos fazer dessa forma (ou podemos descobrir que j\u00e1 n\u00e3o podemos fazer essa tarefa de todo). Al\u00e9m disso, compra um equipamento para o ajudar e este funciona durante algum tempo, mas depois chega a um ponto em que j\u00e1 n\u00e3o \u00e9 \u00fatil e tem de comprar outro equipamento ou pensar noutra coisa.<\/p>\n

O segundo maior desafio de viver com a LGMD, para mim, \u00e9 n\u00e3o saber como \u00e9 que esta doen\u00e7a vai afetar o nosso futuro. Cada pessoa progride de forma diferente, em graus e ritmos diferentes, pelo que \u00e9 dif\u00edcil prever quais ser\u00e3o as suas necessidades futuras ou planear qualquer tipo de futuro, porque fisicamente n\u00e3o sabemos em que estado nos encontraremos.<\/p>\n

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

Trabalho arduamente para viver uma vida plena, por isso \u00e9 dif\u00edcil para mim nomear uma realiza\u00e7\u00e3o. Por vezes, viver com uma doen\u00e7a e levantar-me da cama parece ser a minha maior realiza\u00e7\u00e3o. Mas, falando a s\u00e9rio, sou m\u00e3e de dois filhos (um biol\u00f3gico e um adotado) e v\u00ea-los crescer d\u00e1-me uma enorme alegria e um imenso sentido de realiza\u00e7\u00e3o. Tamb\u00e9m fui p\u00e1roco durante quase dez anos e tive a grande honra de acompanhar as pessoas nos seus momentos mais dif\u00edceis. Saber que posso t\u00ea-las ajudado a atravessar essa fase dif\u00edcil (mesmo que tenha sido em pequena escala) d\u00e1-me uma sensa\u00e7\u00e3o de orgulho.<\/p>\n

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

A LGMD influenciou a minha vida de muitas maneiras. Ensinou-me a adaptar-me ao meu ambiente. Penso que, quando se vive com esta doen\u00e7a, aprende-se naturalmente a pensar fora da caixa.<\/p>\n

Tamb\u00e9m me ensinou a n\u00e3o ficar a remoer, porque quando ficamos a remoer sentimo-nos \"presos\", o que n\u00e3o \u00e9 \u00fatil nem saud\u00e1vel. A LGMD tamb\u00e9m me deu o dom de apreciar todas as pequenas coisas da vida. Mais importante ainda, a LGMD deu-me a capacidade de n\u00e3o me levar t\u00e3o a s\u00e9rio. A minha filha mais nova diz-me regularmente que sou \"pateta\" e n\u00e3o me importo com isso - a vida \u00e9 demasiado curta e demasiado incerta para n\u00e3o fazer uma pausa e dar umas boas gargalhadas. Um dos meus lemas na vida \u00e9: \"Se o plano 'A' n\u00e3o funcionar, h\u00e1 mais vinte e cinco letras no alfabeto!\" J<\/p>\n

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

Esta doen\u00e7a afecta cada pessoa de forma diferente e, mesmo na mesma pessoa, afecta-a de forma diferente dependendo do dia e do ambiente que a rodeia. Isto significa que, por vezes, pode haver muita ansiedade para a pessoa com D.M. Por vezes, uma tarefa aparentemente simples e mundana para uma pessoa sem defici\u00eancia pode parecer esmagadora para uma pessoa com D.M. devido ao processo e\/ou \u00e0s barreiras f\u00edsicas envolvidas. Tudo o que posso dizer ao mundo, aos amigos, \u00e0 fam\u00edlia e aos prestadores de cuidados \u00e9 que \u00e9 importante amar e apoiar as pessoas com D.M. n\u00e3o s\u00f3 fisicamente, mas tamb\u00e9m emocional e psicologicamente - mesmo quando n\u00e3o se compreende completamente o que est\u00e3o a sentir e porqu\u00ea.<\/p>\n

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

Se eu acordasse hoje e n\u00e3o tivesse sintomas, iria, sem d\u00favida, diretamente para a praia!<\/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<\/p>","protected":false},"excerpt":{"rendered":"

LGMD SPOTLIGHT INTERVIEW Name:\u00a0 Anna \u00a0\u00a0Age: \u00a0\u00a036 yrs. old Country: […]<\/p>","protected":false},"author":1,"featured_media":1376,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,35],"tags":[38,36],"class_list":["post-1378","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2i","tag-canada","tag-lgmd2i"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Anna - 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\/11\/anna\/\" \/>\n<meta property=\"og:locale\" content=\"pt_PT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Anna - 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