{"id":1446,"date":"2017-04-08T12:30:56","date_gmt":"2017-04-08T17:30:56","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1446"},"modified":"2017-04-08T12:30:56","modified_gmt":"2017-04-08T17:30:56","slug":"darlene","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2017\/04\/08\/darlene\/","title":{"rendered":"INDIV\u00cdDUO COM LGMD: Darlene"},"content":{"rendered":"

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

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

Nome<\/strong>: Darlene\u00a0\u00a0\u00a0 Idade<\/strong>: 65 anos de idade\"\"<\/a><\/p>\n

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

LGMD Sub-tipo<\/strong>: Miopatia de Miyoshi sem Disferlina<\/p>\n

 <\/p>\n

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

Foi-me diagnosticado aos 64 anos de idade.<\/p>\n

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

Em retrospetiva, apercebo-me agora que os sintomas come\u00e7aram nos meus 40 anos ou mesmo antes. Sempre fui ativo, mas \u00e0 medida que os anos passavam, as habilidades como correr, esquiar e patinar tornavam-se cada vez mais dif\u00edceis, por isso fiz outras actividades como ciclismo, kettlebells, muscula\u00e7\u00e3o e treino CrossFit. Lidava com os meus sintomas de Raynaud vestindo-me mais quente. O desgaste muscular vis\u00edvel nas minhas panturrilhas no in\u00edcio dos anos 60 deu in\u00edcio \u00e0 minha longa viagem de um ano at\u00e9 ao diagn\u00f3stico. Nessa altura, 80-90% de ambos os m\u00fasculos gastrocn\u00e9mios tinham sido substitu\u00eddos por gordura.<\/p>\n

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

N\u00e3o, mas duas irm\u00e3s t\u00eam\/tiveram diabetes juvenil. Uma morreu de complica\u00e7\u00f5es card\u00edacas da doen\u00e7a aos 53 anos. A outra, atualmente com 58 anos e com uma sa\u00fade fr\u00e1gil, fez um implante de rim\/p\u00e2ncreas aos 39 anos.<\/p>\n

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

Como copropriet\u00e1rio de um gin\u00e1sio de CrossFit, estou constantemente a tentar encontrar o equil\u00edbrio adequado entre trabalhar o suficiente para desafiar e manter os meus m\u00fasculos saud\u00e1veis fortes e m\u00f3veis, mas n\u00e3o t\u00e3o forte que destrua os meus m\u00fasculos em risco. At\u00e9 agora, o impacto da doen\u00e7a tem sido m\u00ednimo na minha vida: continuo a parecer, sentir e mover-me mais jovem do que a m\u00e9dia das pessoas de 65 anos. Tento concentrar-me no que sou capaz de fazer todos os dias e lembrar-me de que toda a gente, e n\u00e3o apenas eu, enfrenta uma doen\u00e7a degenerativa progressiva chamada envelhecimento.<\/p>\n

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

O facto de ter crescido com irm\u00e3s diab\u00e9ticas incutiu em mim a import\u00e2ncia de uma boa alimenta\u00e7\u00e3o e de exerc\u00edcio f\u00edsico regular. Compreendo que o que ponho na boca \u00e9 importante e que um sono adequado e a recupera\u00e7\u00e3o do stress s\u00e3o essenciais, independentemente do que nos aflige. Embora n\u00e3o possa ter a certeza de que os h\u00e1bitos saud\u00e1veis ajudam a minimizar os meus sintomas, opto por acreditar que sim e continuarei a ser o mais proactiva poss\u00edvel nesse sentido. Como treinador, posso ser o modelo de excelentes pr\u00e1ticas de sa\u00fade e trabalhar de perto com os nossos membros para que eles pr\u00f3prios colham esses benef\u00edcios. Tornei-me treinador de CrossFit aos 60 anos (depois de uma carreira de 35 anos como jornalista de um jornal) e \u00e9 gratificante ver outros dizerem-nos que os ajud\u00e1mos a mudar as suas vidas para melhor.<\/p>\n

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

D\u00e9cadas antes do meu diagn\u00f3stico oficial, as limita\u00e7\u00f5es f\u00edsicas intrigantes levaram-me a encontrar outras formas de ser ativo e de contribuir para uma comunidade de atletas de resist\u00eancia competitivos ao ar livre. Ser resiliente, fisicamente ativo e forte \u00e9 uma parte da minha identidade que vou trabalhar para manter enquanto for capaz. Estou a contar com essa mentalidade para me ajudar a enfrentar as incertezas que o futuro me reserva.<\/p>\n

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

A distrofia muscular \u00e9 uma doen\u00e7a rara com infinitas varia\u00e7\u00f5es individuais. E uma vez que n\u00e3o h\u00e1 cura e h\u00e1 poucos incentivos financeiros para as empresas farmac\u00eauticas encontrarem uma, o diagn\u00f3stico \u00e9 muitas vezes o fim do interesse dos profissionais de sa\u00fade por si. Procure apoio onde puder e seja o seu pr\u00f3prio defensor.<\/p>\n

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

Adoraria praticar esqui de fundo. Vivemos num sistema de trilhos que liga ao American Birkebeiner Ski Trail de 54K e eu adoraria experimentar a emo\u00e7\u00e3o de deslizar graciosamente ao longo das colinas e vales deste belo trilho florestal.<\/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":"

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