{"id":1651,"date":"2018-01-08T10:22:50","date_gmt":"2018-01-08T16:22:50","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1651"},"modified":"2018-01-08T10:22:50","modified_gmt":"2018-01-08T16:22:50","slug":"jill-2","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2018\/01\/08\/jill-2\/","title":{"rendered":"INDIV\u00cdDUO COM LGMD: Jill"},"content":{"rendered":"

Entrevista com o LGMD Spotlight<\/strong><\/span><\/p>\n

Nome<\/strong><\/span>:\u00a0 \u00a0 Jill\u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0\u00a0Idade<\/strong>: 33 anos de idade\"\"<\/a><\/span><\/p>\n

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

LGMD Sub-tipo<\/strong>: LGMD2i<\/span><\/p>\n

 <\/p>\n

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

Foi-me diagnosticado aos 27 anos de idade.<\/span><\/p>\n

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

Na escola prim\u00e1ria, eu era sempre a \u00faltima crian\u00e7a a cruzar a linha de chegada em <\/span>gin\u00e1sio. Tamb\u00e9m me lembro de ter de faltar a actividades escolares devido a dolorosas c\u00e3ibras nas pernas. No entanto, eu estava na equipa de dan\u00e7a e tinha um <\/span>super normal inf\u00e2ncia. Depois do nascimento do meu primeiro filho, em 2008, aos 23 anos, comecei a ir \u00e0s urg\u00eancias de vez em quando com fadiga e dores. Lembro-me de dizer ao meu marido: \"H\u00e1 algo de errado comigo e um dia hei-de descobrir o que \u00e9\". Ap\u00f3s o nascimento da minha segunda filha, em 2010, debati-me com a fisicalidade de ter um beb\u00e9 e um rec\u00e9m-nascido. J\u00e1 n\u00e3o era capaz de subir um lance de escadas sem grande esfor\u00e7o. Ainda pensava \"se calhar \u00e9 assim que as m\u00e3es cansadas se sentem\". Depois, em 2011, entrei em rabdomi\u00f3lise ap\u00f3s apanhar um v\u00edrus e ficar com febre. Fui ao m\u00e9dico com fraqueza grave e a minha CPK era de 11.000. Isso levou-nos finalmente ao caminho certo e foi revelado o diagn\u00f3stico de LGMD2I. Como muitos de v\u00f3s, foi um longo caminho at\u00e9 ao diagn\u00f3stico.<\/span><\/p>\n

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

N\u00e3o, sou homozig\u00f3tica recessiva, por isso ambos os meus pais eram portadores. Felizmente, o meu irm\u00e3o e a minha irm\u00e3 n\u00e3o est\u00e3o afectados.<\/span><\/p>\n

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

As minhas filhas eram beb\u00e9s quando me foi diagnosticado. Um ano depois, foi diagnosticado ao meu marido um cancro no c\u00e9rebro. Receei que n\u00e3o fosse capaz de cuidar da minha fam\u00edlia. Passei muitas horas a preocupar-me com o que nos iria acontecer. Tento manter-me no momento e desfrutar dos bons momentos. Pode ser um desafio manter a \"cabe\u00e7a no lugar\" e n\u00e3o antecipar o meu decl\u00ednio ou deixar que a frustra\u00e7\u00e3o e a dor me ponham em causa <\/span>para cama. No entanto, eu estou aqui, hoje. O meu marido est\u00e1 c\u00e1, hoje. Os meus filhos s\u00e3o fant\u00e1sticos e resistentes. Por isso, continuo grata e continuamos.<\/span><\/p>\n

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

A minha maior realiza\u00e7\u00e3o pessoal \u00e9 a minha felicidade. Esforcei-me muito para ser feliz, apesar dos nossos desafios. Orgulho-me muito disso. \u00c9 uma escolha que tento fazer todos os dias.<\/span><\/p>\n

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

Sinto que estou a viver uma vida com mais significado depois do diagn\u00f3stico. Amo as pessoas com mais intensidade. Aprendi a abrandar, porque tenho de o fazer, e isso n\u00e3o \u00e9 uma m\u00e1 forma de viver. Tamb\u00e9m estou grata pela oportunidade de compreender e ter empatia por aqueles que sofrem de doen\u00e7as cr\u00f3nicas, dor, luto... todas essas doen\u00e7as invis\u00edveis que podem t\u00e3o facilmente ser mal interpretadas como pregui\u00e7a ou falta de esfor\u00e7o. Estou a ver-vos e lamento que seja dif\u00edcil.<\/span><\/p>\n

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

Quero que o mundo saiba que a LGMD \u00e9 uma doen\u00e7a herdada geneticamente e n\u00e3o uma \"defici\u00eancia nutricional\" ou o resultado de n\u00e3o ir ao gin\u00e1sio. Esta n\u00e3o \u00e9 uma doen\u00e7a que as pessoas escolham. \u00c9 progressiva e n\u00e3o tem cura. Embora manter-se positivo e ativo ajude, n\u00e3o ir\u00e1 parar a progress\u00e3o. Na minha opini\u00e3o, a melhor coisa a dizer a algu\u00e9m com LGMD \u00e9: \"Eu sei que \u00e9 dif\u00edcil e voc\u00ea est\u00e1 a fazer um bom trabalho.\" Seria maravilhoso encontrar um tratamento ou uma cura no futuro. \u00c9 bom manter a esperan\u00e7a.<\/span><\/p>\n

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

Dar boleia \u00e0s minhas filhas para a escola, dar uma grande festa e dar um passeio de bicicleta em fam\u00edlia \u00e0 volta do nosso lago preferido.<\/span><\/p>\n

 <\/p>\n

 <\/p>\n

* Para ler mais \"LGMD Spotlight Interviews\" ou para se voluntariar para uma pr\u00f3xima entrevista, visite o nosso site <\/span>em https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a>\u00a0<\/span><\/p>\n

* Por favor, GOSTEI, COMENTEI e PARTILHEI esta publica\u00e7\u00e3o para ajudar a aumentar a sensibiliza\u00e7\u00e3o para a LGMD!<\/span><\/p>","protected":false},"excerpt":{"rendered":"

LGMD Spotlight Interview Name:\u00a0 \u00a0 Jill\u00a0 \u00a0 \u00a0 \u00a0 \u00a0 […]<\/p>","protected":false},"author":1,"featured_media":1650,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,35],"tags":[83],"class_list":["post-1651","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2i","tag-lgmd2i-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Jill - 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\" href=\"https:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2018\/01\/08\/jill-2\/\" \/>\n<meta property=\"og:locale\" content=\"pt_PT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Jill - 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