{"id":414,"date":"2015-01-18T22:10:12","date_gmt":"2015-01-19T04:10:12","guid":{"rendered":"http:\/\/mainstay-bg.com\/wp\/?p=148"},"modified":"2015-01-18T22:10:12","modified_gmt":"2015-01-19T04:10:12","slug":"jessica","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2015\/01\/18\/jessica\/","title":{"rendered":"INDIV\u00cdDUO COM LGMD: Jessica"},"content":{"rendered":"

01\/18\/2015:<\/p>\n

NOME<\/strong>: J\u00e9ssica\u00a0\u00a0\u00a0\"LGMD2A<\/a> <\/span><\/p>\n

IDADE<\/strong>: 31
\n<\/span><\/p>\n

PA\u00cdS<\/strong>: Estados Unidos
\n<\/span><\/p>\n

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


\n<\/span>COM QUE IDADE FOI DIAGNOSTICADO<\/strong>:<\/span><\/span>
\n\u00a0Foi-me diagnosticada Distrofia Muscular das Cinturas dos Membros aos 12 anos, mas s\u00f3 por volta dos 25 anos \u00e9 que fui subtipada com 2A.<\/span><\/span><\/p>\n

QUAIS FORAM OS SEUS PRIMEIROS SINTOMAS<\/strong>:
\nDesde os meus primeiros passos que apresentava alguma dificuldade em andar com os dedos dos p\u00e9s, mas os meus pais disseram-me que isso iria passar. Com o tempo, tornou-se mais dif\u00edcil ficar de p\u00e9 e andar na horizontal, mas n\u00e3o apresentei quaisquer outros sintomas at\u00e9 aos 8 anos, quando comecei a ter alguma dificuldade em subir escadas, correr e fazer actividades nas aulas de gin\u00e1stica e levantar-me do ch\u00e3o.<\/p>\n

TEM OUTROS FAMILIARES QUE SOFREM DE LGMD<\/strong>:
\nN\u00e3o, sou a \u00fanica pessoa da minha fam\u00edlia que vive com uma forma de Distrofia Muscular.<\/p>\n

QUAIS S\u00c3O, NA SUA OPINI\u00c3O, OS MAIORES DESAFIOS DE VIVER COM A LGMD?<\/strong>:
\nEstou grato por haver muitos aspectos da vida com a LGMD que, pela gra\u00e7a de Deus, tenho vindo a aceitar e a adaptar-me ao longo do tempo, mas um aspeto com o qual ainda me debato \u00e9 o desejo de uma maior independ\u00eancia e a medida em que tenho de depender dos outros para obter ajuda e realizar as tarefas normais do dia a dia. O desejo e a incapacidade de realizar tarefas \u00e9 como ter uma comich\u00e3o que n\u00e3o se consegue co\u00e7ar. Muitas vezes, \u00e9 preciso ter muita paci\u00eancia, o que \u00e9 dif\u00edcil para mim. Para complicar as coisas, acrescente-se a culpa que por vezes se sente. H\u00e1 a realidade da nossa pr\u00f3pria necessidade constante de ajuda dos outros e a realidade de que as pessoas que prestam cuidados t\u00eam necessidades, desejos, agendas e limita\u00e7\u00f5es pr\u00f3prias, \u00e0s quais tenho de estar atento e ser compreensivo.<\/p>\n

QUAL \u00c9 A SUA MAIOR REALIZA\u00c7\u00c3O<\/strong>:
\nA minha maior realiza\u00e7\u00e3o \u00e9 a conclus\u00e3o do meu programa de doutoramento e a obten\u00e7\u00e3o do meu Psy.D. em Psicologia Cl\u00ednica.<\/p>\n

COMO \u00c9 QUE A LGMD O INFLUENCIOU A TORNAR-SE A PESSOA QUE \u00c9 HOJE<\/strong>:
\nDeus usou a minha conviv\u00eancia com MD para o bem, de muitas maneiras. Ele usou-a para me mostrar a minha necessidade d'Ele, o que mudou toda a minha vida. Agora tenho uma paz e uma alegria duradouras, apesar das circunst\u00e2ncias. \"Quanto mais fracos nos sentimos, mais nos apoiamos. E quanto mais nos inclinamos, mais fortes nos tornamos espiritualmente, mesmo enquanto o nosso corpo se desgasta.\" (J.I. Packer) Deus mostrou-me muitas outras b\u00ean\u00e7\u00e3os atrav\u00e9s disso. Tornei-me criativo na resolu\u00e7\u00e3o de problemas e aprendi a adaptar-me \u00e0s mudan\u00e7as. Com a idade, mudei o foco da minha aten\u00e7\u00e3o da atividade f\u00edsica para o aprofundamento das rela\u00e7\u00f5es, a explora\u00e7\u00e3o da arte e o trabalho especialmente \u00e1rduo nos estudos. Fiz amizades para toda a vida com muitas pessoas especiais que t\u00eam defici\u00eancias. Tamb\u00e9m orientou as minhas actividades educativas e profissionais na esperan\u00e7a de ajudar os outros a lidar com a defici\u00eancia de forma saud\u00e1vel.<\/p>\n

O QUE \u00c9 QUE QUER QUE O MUNDO SAIBA SOBRE A LGMD<\/strong>: A LGMD \u00e9 um grupo de doen\u00e7as que afectam principalmente os m\u00fasculos do ombro e da cintura p\u00e9lvica. Existem mais de 20 subtipos diferentes de LGMD que foram identificados. A LGMD pode ter um aspeto diferente dependendo de v\u00e1rios factores, incluindo coisas como a(s) muta\u00e7\u00e3o(\u00f5es) gen\u00e9tica(s) espec\u00edfica(s), a idade de in\u00edcio, a taxa de progress\u00e3o, etc. Pode nem sequer ser poss\u00edvel saber que algu\u00e9m tem LGMD. Pode ver outra pessoa e pensar que ela apenas caminha de forma diferente ou mais lenta. Outra pessoa pode precisar de utilizar uma cadeira de rodas a tempo inteiro. Mesmo duas pessoas com o mesmo subtipo exato podem ter uma apresenta\u00e7\u00e3o completamente diferente. Tente n\u00e3o fazer suposi\u00e7\u00f5es, especialmente com base no que v\u00ea. Mais importante ainda, quero que o mundo saiba que a LGMD n\u00e3o \u00e9 um castigo ou motivo de pena, nem uma raz\u00e3o para acreditar que a vida de algu\u00e9m \u00e9 menos valiosa ou alegre. Deus pode usar, e usa, experi\u00eancias dif\u00edceis, prova\u00e7\u00f5es e sofrimento<\/p>\n

SE A SUA LGMD PUDESSE SER \"CURADA\" AMANH\u00c3, QUAL SERIA A PRIMEIRA COISA QUE GOSTARIA DE FAZER:<\/strong> Gostaria de pegar no meu filho e passear com ele ao colo. Gostaria de dan\u00e7ar com o meu marido e partilhar com ele algum tipo de atividade ao ar livre\/desportiva\/exerc\u00edcio. Gostaria de correr, saltar e pular... e louvar a Deus por tudo isso!<\/p>\n

 <\/p>","protected":false},"excerpt":{"rendered":"

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