{"id":5582,"date":"2021-12-12T18:05:10","date_gmt":"2021-12-12T18:05:10","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5582"},"modified":"2024-02-09T14:23:57","modified_gmt":"2024-02-09T14:23:57","slug":"individual-with-lgmd-soralla","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2021\/12\/12\/individual-with-lgmd-soralla\/","title":{"rendered":"INDIV\u00cdDUO COM LGMD: Soralla"},"content":{"rendered":"

\"Lgmd2a<\/p>\n

LGMD \"Entrevista em destaque\" <\/strong><\/p>\n

N<\/strong>ame<\/strong>: Soralla<\/p>\n

Idade<\/strong>: 28<\/p>\n

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

LGMD Sub-tipo<\/strong>: LGMD 2A\/R1 relacionado com a calpa\u00edna 3<\/p>\n

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

Foi-me diagnosticado aos 23 anos.<\/p>\n

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

Os meus sintomas no in\u00edcio eram uma ligeira fraqueza da parte inferior do corpo, era dif\u00edcil subir as escadas t\u00e3o depressa como estava habituada, ou levantar-me do ch\u00e3o, especialmente quando nos sent\u00e1vamos no p\u00e1tio na aula de educa\u00e7\u00e3o f\u00edsica. N\u00e3o se esque\u00e7a que estes sintomas come\u00e7aram no dia 11 de setembro.th<\/sup> ano do liceu. No entanto, s\u00f3 me foi diagnosticada aos 23 anos.<\/p>\n

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

Nenhum outro membro da fam\u00edlia foi diagnosticado com LGMD. Tenho dois irm\u00e3os mais novos que ainda n\u00e3o fizeram o teste, mas j\u00e1 passaram dos 23 anos e ambos est\u00e3o bem de momento.<\/p>\n

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

Pessoalmente, para mim, o maior desafio \u00e9 aceitar a pessoa em que me estou a tornar. Digo isto porque, por vezes, apercebo-me de que muitas das mudan\u00e7as por que estou a passar n\u00e3o s\u00e3o da minha escolha e est\u00e3o fora do meu controlo. Uma delas \u00e9 estar a perder lentamente a minha independ\u00eancia para me defender. Depois de ter vivido uma vida muito independente e de sentir que o mundo estava \u00e0 minha disposi\u00e7\u00e3o, a sensa\u00e7\u00e3o de estar a perder essa vis\u00e3o do futuro tem sido e ser\u00e1 provavelmente o meu maior desafio.<\/p>\n

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

A minha maior realiza\u00e7\u00e3o \u00e9 ter encontrado a minha voz. N\u00e3o sou uma defensora t\u00e3o grande como gostaria de ser, mas j\u00e1 falei sobre mim e sobre a minha hist\u00f3ria algumas vezes. Criei um canal no YouTube e contei a minha hist\u00f3ria a partir da minha pr\u00f3pria perspetiva, e tamb\u00e9m estou muito orgulhosa de mim pr\u00f3pria por ter voltado \u00e0 escola, para terminar os meus estudos que estavam parados devido ao diagn\u00f3stico desta defici\u00eancia.<\/p>\n

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

Abriu-me o cora\u00e7\u00e3o, a mente e a alma de uma forma que nada mais conseguiu. Quero acreditar que sempre fui muito emp\u00e1tica e que tinha um grande cora\u00e7\u00e3o, mas infelizmente um cora\u00e7\u00e3o muito fraco. Fui muito intimidado em crian\u00e7a e passei por traumas. Agora que estou a passar por isto, sinto que tudo o que aconteceu no passado preparou o meu cora\u00e7\u00e3o para esta batalha. Digo isto em voz alta e com orgulho, porque agora sou mais forte emocionalmente do que alguma vez imaginei ser. Se eu falasse hoje ao meu \"eu\" mais novo sobre mim, n\u00e3o acreditaria em mim.<\/p>\n

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

Quero que o mundo saiba que somos importantes. A LGMD \u00e9 uma defici\u00eancia f\u00edsica, mas afecta a nossa sa\u00fade emocional, mental e at\u00e9 espiritual. Por isso, por favor, ajudem os outros a contar as suas verdades, as suas hist\u00f3rias e ajudem-nos a espalhar pelo mundo a nossa mensagem de esperan\u00e7a, de que um dia podemos encontrar uma cura.<\/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 pudesse ser curado amanh\u00e3, haveria tantas coisas, aventuras, passeios e eventos a que eu iria assistir e ir. Mas uma coisa que eu continuaria a fazer seria defender e trabalhar arduamente para garantir que todos os que tamb\u00e9m podem ser curados tenham a oportunidade que merecem. Porque depois de viver com isto, n\u00e3o posso levantar-me e viver a minha vida e nunca olhar para tr\u00e1s como se nada tivesse acontecido.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5581,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[70],"class_list":["post-5582","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-lgmd2a-calpainopathy-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Soralla - 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\" 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