{"id":1580,"date":"2017-09-22T12:01:04","date_gmt":"2017-09-22T17:01:04","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1580"},"modified":"2017-09-22T12:01:04","modified_gmt":"2017-09-22T17:01:04","slug":"hillary","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2017\/09\/22\/hillary\/","title":{"rendered":"INDIV\u00cdDUO COM LGMD: Hillary"},"content":{"rendered":"

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

NOME:<\/strong>\u00a0 Hillary \u00a0\u00a0IDADE:<\/strong>\u00a0 32 anos\"\"<\/a><\/span><\/p>\n

PA\u00cdS:<\/strong>\u00a0 EUA<\/span><\/p>\n

LGMD Sub-tipo:<\/strong>\u00a0 LGMD2A \/ Calpainopatia<\/span><\/p>\n

 <\/p>\n

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

Foi-me diagnosticado aos 13 anos de idade.<\/span><\/p>\n

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

Os meus primeiros sintomas foram tend\u00f5es de Aquiles apertados, arcos altos e um corredor lento. Comecei a correr tal como o meu irm\u00e3o mais velho, que foi diagnosticado com LGMD2A na mesma altura que eu.<\/span><\/p>\n

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

Sim, o meu irm\u00e3o mais velho (5 anos mais velho) tamb\u00e9m tem LGMD2A.<\/span><\/p>\n

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

O mais dif\u00edcil no LGMD2A \u00e9 o facto de estar em constante mudan\u00e7a. Ao longo dos \u00faltimos 20 anos, descobri formas criativas de realizar as tarefas di\u00e1rias. Tarefas t\u00e3o simples como ir \u00e0 casa de banho de forma independente tiveram de ser ajustadas e recriadas muitas vezes. A certa altura, utilizava os antebra\u00e7os, a testa e as barras de apoio para subir literalmente pela parede a partir de uma posi\u00e7\u00e3o sentada na sanita. Uma vez que a doen\u00e7a est\u00e1 em constante muta\u00e7\u00e3o, as minhas solu\u00e7\u00f5es s\u00f3 funcionam durante alguns anos e depois tenho de voltar \u00e0 prancheta para descobrir algo novo.<\/span><\/p>\n

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

A minha fam\u00edlia \u00e9 a minha maior realiza\u00e7\u00e3o. Casei-me aos 23 anos, quando ainda era uma pessoa muito capaz. No espa\u00e7o de 9 curtos anos, sou agora uma utilizadora de cadeira de rodas a tempo inteiro. O meu marido e eu tivemos o privil\u00e9gio de adotar duas crian\u00e7as lindas. O meu marido e os meus dois filhos s\u00e3o tudo para mim. A vida nem sempre \u00e9 f\u00e1cil, mas com estes 3 ao meu lado (ou ao meu colo) lembro-me de como a vida \u00e9 realmente bela. Quando me foi diagnosticada a primeira vez, preocupava-me sempre como iria correr atr\u00e1s dos meus filhos ou salv\u00e1-los de correrem para a rua. Nunca me imaginei numa cadeira de rodas a correr atr\u00e1s deles! Sabiam que as cadeiras de rodas podem andar at\u00e9 8 quil\u00f3metros por hora? Afinal, n\u00e3o tinha nada com que me preocupar. Consigo trabalhar a tempo parcial a partir de casa e equilibrar as minhas responsabilidades como esposa e m\u00e3e.<\/span><\/p>\n

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

Quando tinha 13 anos, jogava basquetebol, voleibol e softbol. O desporto era tudo para mim. Como se pode imaginar, o diagn\u00f3stico foi um choque total e estive em nega\u00e7\u00e3o durante algum tempo. Durante os testes para a equipa de voleibol da JV, fiquei completamente chocada com o facto de os meus treinadores acharem que eu n\u00e3o conseguia acompanhar o ritmo. Decidiram deixar-me jogar, mas no final da \u00e9poca, aceitei o facto de n\u00e3o ser t\u00e3o r\u00e1pida como as minhas colegas de equipa. Isto foi um grande golpe emocional. Felizmente, com a influ\u00eancia dos meus pais e amigos, decidi tentar coisas novas e candidatei-me \u00e0 associa\u00e7\u00e3o de estudantes e fui redator da equipa do anu\u00e1rio. Manter-me ocupada ajudou-me e descobri coisas novas de que gostava. As experi\u00eancias e oportunidades que tive ajudaram-me a conseguir uma bolsa de estudo para a faculdade e levaram-me a mais oportunidades de lideran\u00e7a no meu campus universit\u00e1rio. Al\u00e9m disso, tive a oportunidade de trabalhar na ind\u00fastria hoteleira nos \u00faltimos 14 anos e agora tenho um cargo que me permite trabalhar a partir de casa. Manter-me ocupada sempre foi um dos melhores rem\u00e9dios para a minha sa\u00fade mental e, para ser sincera, n\u00e3o me lembro de uma altura em que n\u00e3o estivesse ocupada!<\/span><\/p>\n

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

Aumentar a consciencializa\u00e7\u00e3o para as doen\u00e7as raras nunca \u00e9 uma tarefa f\u00e1cil. Quando vir os bombeiros a encher a bota, ou quando vir os Shamrocks nos estabelecimentos comerciais locais, continue a fazer donativos. Esse dinheiro ajuda a desenvolver a investiga\u00e7\u00e3o e ajuda a enviar crian\u00e7as para o campo de f\u00e9rias da MDA. Tenho esperan\u00e7a de que a investiga\u00e7\u00e3o que est\u00e1 a ser realizada hoje mude vidas.<\/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

A primeira coisa que fazia era correr atr\u00e1s dos meus filhos, atir\u00e1-los para o ar e brincar at\u00e9 ficar tonta!<\/span><\/p>\n

 <\/p>\n

* Para ler mais \"LGMD Spotlight Interviews\" ou para se voluntariar para uma pr\u00f3xima entrevista, por favor visite o nosso website em<\/span> \u00a0https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>\n

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

LGMD \u201cSPOTLIGHT INTERVIEW\u201d NAME:\u00a0 Hillary \u00a0\u00a0AGE:\u00a0 32 yrs. old COUNTRY:\u00a0 […]<\/p>","protected":false},"author":1,"featured_media":1579,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[70],"class_list":["post-1580","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-lgmd2a-calpainopathy-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Hillary - 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\/2017\/09\/22\/hillary\/\" \/>\n<meta property=\"og:locale\" content=\"pt_PT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Hillary - 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