{"id":1440,"date":"2017-03-25T10:00:37","date_gmt":"2017-03-25T15:00:37","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1440"},"modified":"2017-03-25T10:00:37","modified_gmt":"2017-03-25T15:00:37","slug":"cecilia","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2017\/03\/25\/cecilia\/","title":{"rendered":"INDIV\u00cdDUO COM LGMD: Cec\u00edlia"},"content":{"rendered":"

Entrevista com o LGMD Spotlight<\/strong><\/p>\n

Nome:<\/strong> Cec\u00edlia \u00a0\u00a0IDADE:<\/strong> 36 anos\"\"<\/a><\/p>\n

Pa\u00eds:<\/strong> Argentina<\/p>\n

LGMD Sub-tipo:\u00a0 <\/strong>LGMD2A\/Calpainopatia<\/p>\n

 <\/p>\n

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

Foi-me diagnosticado quando tinha 12 anos de idade.<\/p>\n

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

Comecei a andar sobre os dedos dos p\u00e9s. Al\u00e9m disso, desde pequeno, a minha m\u00e3e notou que eu tinha reac\u00e7\u00f5es atrasadas, por exemplo, ao correr atr\u00e1s de uma bola.<\/p>\n

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

N\u00e3o, sou a \u00fanica pessoa da minha fam\u00edlia com LGMD.<\/p>\n

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

O maior desafio foi habituar-me \u00e0s primeiras mudan\u00e7as, \u00e0s primeiras coisas que deixei de poder fazer: por exemplo, subir escadas e levantar-me do ch\u00e3o. Numa fase mais avan\u00e7ada, arranjar estrat\u00e9gias para me conseguir levantar da cama, de uma cadeira, etc. e depois, fazer o luto pela perda da capacidade de andar e come\u00e7ar a usar uma cadeira de rodas ou uma trotinete a tempo parcial ou a tempo inteiro.<\/p>\n

Al\u00e9m disso, foi um desafio encontrar o equil\u00edbrio e conhecer os limites do meu corpo. Saber at\u00e9 onde podia ir sem me esgotar; decidir o que fazer sozinha e quando pedir ajuda.<\/p>\n

O que \u00e9 bom \u00e9 que aprendi a aceitar as mudan\u00e7as, a ser inteligente e criativo e a pensar em solu\u00e7\u00f5es para fazer as coisas de outras maneiras e a procurar alternativas.<\/p>\n

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

A minha maior realiza\u00e7\u00e3o \u00e9 o facto de ter sempre conseguido o que queria e de o continuar a fazer. A minha fam\u00edlia merece muito cr\u00e9dito por isso, sempre me ensinou que a doen\u00e7a n\u00e3o \u00e9 uma barreira ou uma desculpa, que tudo \u00e9 poss\u00edvel se conseguirmos \"encontrar um caminho\", que existe um caminho alternativo, que pode ter obst\u00e1culos, mas que nos levar\u00e1 ao nosso objetivo.<\/p>\n

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

Se n\u00e3o tivesse esta doen\u00e7a, n\u00e3o seria a pessoa que sou. Os desafios fizeram-me crescer e tornar-me forte. N\u00e3o nego o que n\u00e3o posso fazer e as circunst\u00e2ncias que me afectam. Desenvolvi a capacidade de enfrentar com uma atitude positiva as mudan\u00e7as que ocorrem. Sei que, de alguma forma, as coisas acabam sempre por se resolver.<\/p>\n

Este facto influenciou a minha carreira profissional e a \u00e1rea em que escolhi trabalhar. Trabalho em organiza\u00e7\u00f5es n\u00e3o governamentais em prol dos direitos das pessoas com defici\u00eancia, especialmente no que diz respeito \u00e0 acessibilidade f\u00edsica. Al\u00e9m disso, aqui na Argentina, fa\u00e7o parte da Associa\u00e7\u00e3o de Distrofia Muscular e escrevo artigos para encorajar outras pessoas que est\u00e3o a passar por situa\u00e7\u00f5es que causam defici\u00eancia.<\/p>\n

O que \u00e9 que quer que o mundo saiba sobre a LGMD?<\/strong><\/p>\n

    \n
  1. Que esta doen\u00e7a, tal como muitas outras, n\u00e3o torna as pessoas menos do que outras.<\/li>\n
  2. Para derrubar mitos, como o de que somos fracos e fr\u00e1geis.<\/li>\n
  3. Ultrapassar os preconceitos.<\/li>\n
  4. Para que haja igualdade de direitos: para que possamos estudar, trabalhar, apaixonarmo-nos e realizar tantas coisas.<\/li>\n<\/ol>\n

    Sou uma pessoa determinada a viver uma vida plena. N\u00e3o \u00e9 isso que toda a gente procura?<\/p>\n

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

    Consigo imaginar tantas coisas! Nada de muito especial, mas apenas para me reconectar com o meu corpo: correr, saltar, subir escadas, andar de bicicleta, brincar com o meu sobrinho no ch\u00e3o, ir a todos os s\u00edtios onde n\u00e3o consegui entrar.<\/p>\n

    E, claramente, teria mais for\u00e7a para continuar a ajudar aqueles que ainda est\u00e3o \u00e0 espera de uma cura! Eu fa\u00e7o parte disto.<\/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 Spotlight Interview Name: Cecilia \u00a0\u00a0AGE: 36 years Country: Argentina […]<\/p>","protected":false},"author":1,"featured_media":1439,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[72],"class_list":["post-1440","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-lgmd2a-calpainopathy-argentina"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Cecilia - 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=\"https:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2017\/03\/25\/cecilia\/\" \/>\n<meta property=\"og:locale\" content=\"pt_PT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Cecilia - 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