{"id":1594,"date":"2017-09-30T10:40:17","date_gmt":"2017-09-30T15:40:17","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1594"},"modified":"2017-09-30T10:40:17","modified_gmt":"2017-09-30T15:40:17","slug":"kourtney","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2017\/09\/30\/kourtney\/","title":{"rendered":"INDIV\u00cdDUO COM LGMD: Kourtney"},"content":{"rendered":"<p><strong>LGMD \"ENTREVISTA EM DESTAQUE\"<\/strong><\/p>\n<p><strong>Nome<\/strong>:  Kourtney\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <strong>Idade<\/strong>: 23 anos <a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2017\/09\/LGMD2B-Kourtney-N.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1593 alignright\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27300%27%20height%3D%27169%27%20viewBox%3D%270%200%20300%20169%27%3E%3Crect%20width%3D%27300%27%20height%3D%27169%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2017\/09\/LGMD2B-Kourtney-N-300x169.png\" alt=\"\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>Pa\u00eds<\/strong>: EUA<\/p>\n<p><strong>LGMD Sub-tipo<\/strong>:    LGMD2B \/ Miopatia de Miyoshi<!--more--><\/p>\n<p><strong>Com que idade foi diagnosticado<\/strong>:<\/p>\n<p>Foi-me diagnosticado aos 14 anos de idade.<\/p>\n<p><strong>Quais foram os seus primeiros sintomas<\/strong>:<\/p>\n<p>O primeiro sintoma que notei foi que os m\u00fasculos da minha barriga da perna come\u00e7aram a inchar incontrolavelmente depois de uma grande atua\u00e7\u00e3o de dan\u00e7a. Passado algum tempo, j\u00e1 n\u00e3o conseguia ver os meus tornozelos e come\u00e7\u00e1mos a ficar preocupados. O m\u00e9dico disse-nos para medirmos os meus g\u00e9meos diariamente e para mantermos um registo. Estavam cada vez maiores. Os m\u00e9dicos pensaram que poderia ser devido a um co\u00e1gulo de sangue, por isso fizeram muitas ecografias \u00e0s minhas pernas, cora\u00e7\u00e3o e est\u00f4mago para ver se havia alguma coisa de errado. N\u00e3o conseguiram encontrar nada de errado. Depois fizeram-me an\u00e1lises ao sangue e viram que os meus n\u00edveis de CK estavam elevados, pelo que decidiram fazer uma biopsia muscular, e foi assim que me diagnosticaram.<\/p>\n<p><strong>Tem outros familiares que sofrem de LGMD: <\/strong><\/p>\n<p>Sim. A minha irm\u00e3 mais velha, Stephanie Garrett, tem o mesmo tipo que eu. Foi-lhe diagnosticada apenas alguns meses antes de mim. Ela parece ter mais problemas nos bra\u00e7os (2B) e eu pare\u00e7o ter mais problemas nas pernas (MM).<\/p>\n<p><strong>Quais s\u00e3o, na sua opini\u00e3o, os maiores desafios de viver com a LGMD?<\/strong>:<\/p>\n<p>Penso que o maior desafio de viver com a doen\u00e7a de Alzheimer \u00e9 lidar com a ideia de que n\u00e3o se pode fazer algo que se era capaz de fazer. H\u00e1 muitas coisas que s\u00e3o dif\u00edceis de fazer fisicamente, como dan\u00e7ar, trepar, andar, etc., que eu costumava fazer muito bem. A parte mais dif\u00edcil \u00e9 estar bem com isso. Penso que a DM \u00e9 mais desafiante do ponto de vista emocional do que f\u00edsico. Mas temos de nos manter positivos e pensar em todas as coisas fant\u00e1sticas que ainda conseguimos fazer.<\/p>\n<p><strong>Qual \u00e9 a sua maior realiza\u00e7\u00e3o<\/strong>:<\/p>\n<p>Esta \u00e9 uma pergunta dif\u00edcil porque sinto que j\u00e1 realizei muita coisa na minha vida. Acabei o liceu, depois a faculdade, tenho dois empregos que adoro, casei com o meu amor do liceu, mas o mais importante \u00e9 que me tornei m\u00e3e. Desde pequena que sempre ansiei por ser m\u00e3e. Quando me foi diagnosticada a LGMD, n\u00e3o sabia se era poss\u00edvel ou n\u00e3o. \u00c0 medida que fui envelhecendo e o meu corpo come\u00e7ou a ficar mais fraco, fui questionando as coisas. Tive muitos receios sobre o mal que poderia causar \u00e0 minha fam\u00edlia devido \u00e0 minha situa\u00e7\u00e3o f\u00edsica. Mas os meus amigos e a minha fam\u00edlia s\u00f3 me t\u00eam apoiado, amado e ajudado.  A minha maior realiza\u00e7\u00e3o \u00e9 a minha filha. Encontrei muitas maneiras de fazer as coisas funcionarem para que ela seja feliz, saud\u00e1vel e segura. Sei que o futuro vai ser dif\u00edcil com crian\u00e7as, mas vai valer muito a pena.<\/p>\n<p><strong>Como \u00e9 que a LGMD o influenciou a tornar-se a pessoa que \u00e9 hoje? <\/strong><\/p>\n<p>Apesar de a LGMD me ter enfraquecido fisicamente, o mais importante \u00e9 que me fortaleceu emocional e espiritualmente. Nunca desejaria que algu\u00e9m tivesse esta doen\u00e7a, no entanto, penso que tem sido uma b\u00ean\u00e7\u00e3o na minha vida. Estou grata por a ter, por poder ensinar outras pessoas sobre ela e por poder ser uma influ\u00eancia e um exemplo para os outros.<\/p>\n<p><strong>O que quer que o mundo saiba sobre a LGMD<\/strong>:<\/p>\n<p>Quero que o mundo saiba que somos pessoas normais, que temos sentimentos e que h\u00e1 coisas que devemos ter cuidado ao fazer ou dizer. Por favor, n\u00e3o olhem fixamente, n\u00e3o me digam que ando de forma estranha, n\u00e3o se riam se eu cair e n\u00e3o me julguem com base nas coisas que posso ou n\u00e3o fazer. Por favor, n\u00e3o fa\u00e7am piadas sobre defici\u00eancias. Por favor, n\u00e3o assumam que sou capaz de fazer alguma coisa. Em vez disso, por favor, ajudem-me, levantem-me e encorajem-me. Por favor, fa\u00e7am-me sentir amado e importante. E, por favor, amem-me da mesma forma como se eu estivesse fisicamente bem.<\/p>\n<p><strong>Se a sua LGMD pudesse ser \"curada\" amanh\u00e3, qual seria a primeira coisa que gostaria de fazer?<\/strong>:<\/p>\n<p>Se eu pudesse curar-me amanh\u00e3, a primeira coisa que faria seria dan\u00e7ar. A dan\u00e7a era o meu cora\u00e7\u00e3o, a minha alma e a minha paix\u00e3o, e sinto a sua falta mais do que tudo.<\/p>\n<p>&nbsp;<\/p>\n<p>* Para ler mais \"LGMD Spotlight Interviews\" ou para se voluntariar para uma pr\u00f3xima entrevista, visite o nosso site em: <a href=\"https:\/\/www.lgmd-info.org\/pt\/spotlight-interviews\/\">https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD \u201cSPOTLIGHT INTERVIEW\u201d Name:\u00a0 Kourtney\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 Age: 23 yrs. old Country: [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1593,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[88],"class_list":["post-1594","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-lgmd2b-miyoshi-myopathy-united-states"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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