{"id":999,"date":"2015-08-27T15:25:15","date_gmt":"2015-08-27T20:25:15","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=999"},"modified":"2015-08-27T15:25:15","modified_gmt":"2015-08-27T20:25:15","slug":"sabrina","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2015\/08\/27\/sabrina\/","title":{"rendered":"INDIV\u00cdDUO COM LGMD: Sabrina"},"content":{"rendered":"

08\/27\/2015<\/p>\n

Nome<\/strong>: Sa<\/strong>brina \u00a0\u00a0\u00a0\u00a0\u00a0IDADE:<\/strong> 32\"LGMD2D<\/a><\/p>\n

PA\u00cdS:\u00a0 <\/strong>Bangladesh<\/p>\n

LGMD Sub-tipo:<\/strong> \u00a0LGMD 2D<\/p>\n

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

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

Aos 9 anos de idade, foi-me diagnosticada a doen\u00e7a.<\/p>\n

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

Ca\u00eda frequentemente e tinha dificuldade em subir escadas e em correr.<\/p>\n

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

Sim! A minha irm\u00e3 mais nova tamb\u00e9m tem LGMD.<\/p>\n

 <\/p>\n

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

Vivendo com LGMD, os primeiros desafios para mim foram as barreiras sociais e de infra-estruturas. Por exemplo, devido a<\/p>\n

Devido \u00e0 inacessibilidade no nosso pa\u00eds, n\u00e3o pude terminar os meus estudos. N\u00e3o podia ir a casamentos, reuni\u00f5es de fam\u00edlia, anivers\u00e1rios ou algo do g\u00e9nero. Por isso, desde crian\u00e7a que deixei de socializar com outras pessoas. Cresci sobretudo entre as quatro paredes da minha casa.<\/p>\n

Al\u00e9m disso, os desafios f\u00edsicos para mim s\u00e3o o facto de n\u00e3o conseguir fazer nada sozinha. N\u00e3o consigo mexer nenhuma parte do meu corpo, exceto os dedos das m\u00e3os, dos p\u00e9s e a cabe\u00e7a. Preciso de ajuda para praticamente tudo, pelo que tenho de depender totalmente de outra pessoa. Os dias passaram e agora o meu estado f\u00edsico tornou-se mais cr\u00edtico. Atualmente, o maior desafio f\u00edsico para mim \u00e9 o meu problema respirat\u00f3rio, apesar do qual quero continuar a minha vida com toda a paix\u00e3o.<\/p>\n

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

A minha vida mudou de um dia para o outro quando soube que a minha querida irm\u00e3 mais nova tinha a mesma doen\u00e7a. Consegui visualizar o mesmo futuro agonizante para ela que eu estava a viver - isto deixou-me revoltada. O resto do mundo n\u00e3o apresenta o mesmo quadro. Porqu\u00ea esta situa\u00e7\u00e3o de discrimina\u00e7\u00e3o no nosso pa\u00eds? Porque \u00e9 que t\u00eam de ouvir \"n\u00e3o\" logo no in\u00edcio da vida para tudo? Mesmo depois de fazerem parte desta sociedade, acabam por se distanciar. Com todas estas perguntas na minha cabe\u00e7a, senti-me frustrado. Depois de uma pequena mudan\u00e7a de mentalidade, escrevi uma carta ao Primeiro-Ministro do meu pa\u00eds em fevereiro de 2008.<\/p>\n

Em abril de 2009, tive a oportunidade de entrar em contacto com o mundo atrav\u00e9s da Internet e do Facebook, que \u00e9 uma forma f\u00e1cil de reunir as pessoas. Inspirado por um amigo do Facebook, tentei fazer chegar a carta ao maior n\u00famero poss\u00edvel de pessoas e sensibiliz\u00e1-las para os direitos das pessoas com defici\u00eancia atrav\u00e9s da advocacia. Assim come\u00e7ou a jornada da Bangladesh Society for the Change and Advocacy Nexus (B-SCAN), uma organiza\u00e7\u00e3o volunt\u00e1ria a 17 de julho de 2009, com o objetivo de dar \u00e0s pessoas com defici\u00eancia uma vida melhor, criando uma rede atrav\u00e9s da advocacia para a mudan\u00e7a do sistema no Bangladesh. Tamb\u00e9m comecei a escrever em blogues para aumentar a consciencializa\u00e7\u00e3o. Fui nomeado para o concurso internacional de blogues do canal de not\u00edcias alem\u00e3o Deutsche Welle em 2011 e obtive a segunda melhor posi\u00e7\u00e3o a n\u00edvel mundial.<\/p>\n

A B-SCAN como um todo teve uma resposta tremenda, muitos mostraram a sua preocupa\u00e7\u00e3o. A nossa vida dentro do muro mudou. Come\u00e7\u00e1mos a sonhar com campanhas de direitos e sensibiliza\u00e7\u00e3o para as pessoas com defici\u00eancia em todo o pa\u00eds, que um dia sensibilizariam e preocupariam as pessoas e, assim, ajudariam as pessoas com defici\u00eancia a obter os seus direitos.<\/p>\n

Todas as manh\u00e3s, quando me levanto, a primeira vis\u00e3o que capta os meus olhos \u00e9 o c\u00e9u azul aberto. Sinto que esta terra \u00e9 realmente bela, que a vida \u00e9 bela. Desejo tocar o c\u00e9u. Quero p\u00f4r-me de p\u00e9 sob o c\u00e9u aberto e respirar fundo. Nunca pensei que alguma vez seria capaz de o fazer, apenas sonhei e desejei. Este desejo, esta for\u00e7a de vontade dava-me for\u00e7a, inspirava-me a viver uma vida boa. E essa for\u00e7a de vontade s\u00f3 me fez sonhar com o B-SCAN, que eu acho que \u00e9 o maior sucesso da minha vida. O B-SCAN \u00e9 a motiva\u00e7\u00e3o que me fez sair para o c\u00e9u aberto.<\/p>\n

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

Quando me foi diagnosticada a LGMD, nunca encarei isso como um problema ou algo do g\u00e9nero. A minha vida mudou quando o mesmo aconteceu com a minha irm\u00e3. Quando a vi a passar pelo mesmo, foi como um quadro totalmente novo, uma perspetiva totalmente nova para mim. Pus-me a pensar em todas as \"Sabrinas\" deste pa\u00eds, na sua sobreviv\u00eancia, na sua dor e mis\u00e9ria. Todos estes pensamentos deram origem a uma nova Sabrina em mim. Como pessoa, tornei-me mais forte.<\/p>\n

Desejo mudar as perspectivas das pessoas e tornar o pa\u00eds num local adequado para as pessoas com defici\u00eancia, estabelecendo os seus direitos.<\/p>\n

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

Viver com a LGMD n\u00e3o \u00e9 o fim da vida. Todos devem aprender mais e mais sobre o assunto. Isso pode ser feito atrav\u00e9s do estudo de todos os s\u00edtios Web relacionados. Todos devem continuar a viver livremente e com alegria, como antes ou ainda mais. Tentar aproveitar cada momento da vida. N\u00e3o importa se ainda n\u00e3o h\u00e1 tratamento. A frustra\u00e7\u00e3o apenas torna a sua vida um fardo para si pr\u00f3prio. A vida \u00e9 verdadeiramente bela. Se h\u00e1 um problema, tem de haver uma solu\u00e7\u00e3o. S\u00f3 temos de a procurar. Mantenha-se sempre positivo.<\/p>\n

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

A minha felicidade n\u00e3o ter\u00e1 limites porque, pela primeira vez desde sempre, poderei sair a correr pela porta fora ao primeiro pingo de chuva. Al\u00e9m disso, se eu ficar curado, vou dar a conhecer o tratamento a toda a gente para que possam ficar curados da mesma forma que eu.<\/p>","protected":false},"excerpt":{"rendered":"

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