{"id":5506,"date":"2021-09-02T15:13:45","date_gmt":"2021-09-02T15:13:45","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5506"},"modified":"2024-02-09T14:24:01","modified_gmt":"2024-02-09T14:24:01","slug":"cyanne","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2021\/09\/02\/cyanne\/","title":{"rendered":"INDIV\u00cdDUO COM LGMD: Cyanne"},"content":{"rendered":"

LGMD \"Entrevista em destaque\"
\n<\/strong><\/p>\n

\"\"<\/p>\n

Nome<\/strong>: Cyanne<\/p>\n

Idade<\/strong>:\u00a0 29<\/p>\n

Pa\u00eds<\/strong>: Austr\u00e1lia do Sul<\/p>\n

LGMD Sub-tipo<\/strong>: LGMD Tipo 2i \/ R9 Relacionado com distroglicanos<\/p>\n

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

Foi-me diagnosticada distrofia muscular quando tinha apenas 2 anos de idade. S\u00f3 aos 21 anos \u00e9 que descobri que tinha LGMD Tipo 2i. Ou R9, agora que o nome foi alterado.<\/p>\n

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

O primeiro sintoma que a minha m\u00e3e notou foi que eu n\u00e3o conseguia manter a cabe\u00e7a erguida quando estava no andarilho.
\nAl\u00e9m disso, n\u00e3o estava a gatinhar quando outros da minha idade estavam. Apenas tinha muitas dificuldades f\u00edsicas.<\/p>\n

O sintoma que notei pela primeira vez foi quando n\u00e3o conseguia acompanhar o ritmo das outras crian\u00e7as. Eu n\u00e3o era t\u00e3o r\u00e1pido como eles, mas isso nunca me incomodou! Eu sabia que era diferente e n\u00e3o me importava com isso.<\/p>\n

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

A minha irm\u00e3 g\u00e9mea tamb\u00e9m tem LGMD2i, mas n\u00e3o h\u00e1 outros casos conhecidos na linhagem familiar.<\/p>\n

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

Tenho dificuldade em perder a minha independ\u00eancia. Est\u00e1 cada vez mais fora do meu alcance \u00e0 medida que me vou deteriorando. Tal como acontece com a vida. Ser\u00e1 que alguma vez vou conseguir chegar ao meu emprego de sonho? Ser\u00e1 que vou conhecer o homem dos meus sonhos? Quanto tempo me resta para continuar a fazer as coisas de que gosto?<\/p>\n

Um dos meus outros desafios em viver com a LGMD \u00e9 o facto de, muitas vezes, as pessoas s\u00f3 verem a minha cadeira de rodas. N\u00e3o v\u00eaem a pessoa que est\u00e1 sentada nela. Estou a trabalhar arduamente para mudar esta situa\u00e7\u00e3o, sensibilizando a minha comunidade e outras pessoas. Estou a mostrar e a explicar que as pessoas com defici\u00eancia tamb\u00e9m s\u00e3o humanas. Temos os mesmos desejos e necessidades que toda a gente.<\/p>\n

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

Uau, sinto que quero copiar e colar o meu curr\u00edculo aqui. Ha ha!<\/p>\n

Estudei muito ao longo dos anos, pois mudei de carreira. Passei pelo menos 10 anos a estudar arquitetura e design de interiores e decora\u00e7\u00e3o. No entanto, mudei de carreira, estou agora a dedicar-me ao aconselhamento e a estudar Arte-Terapia. Ao longo dos anos, fiz provavelmente um total de 20 cursos. Alguns destes cursos s\u00e3o apenas cursos de um dia, n\u00e3o entrem em p\u00e2nico! Tamb\u00e9m fiz muito voluntariado. Al\u00e9m disso, sou uma defensora dos que t\u00eam dificuldade em falar. Tenho estado envolvida em tornar a minha praia acess\u00edvel a cadeiras de rodas. Angariando fundos para cadeiras de rodas e tapetes de praia. Tamb\u00e9m trabalhei arduamente para conseguir uma instala\u00e7\u00e3o para mudar de lugar. E muito mais.<\/p>\n

Ao longo dos anos, fiz algumas interven\u00e7\u00f5es p\u00fablicas em eventos e f\u00f3runs, trabalhei em estreita colabora\u00e7\u00e3o com a C\u00e2mara Municipal e estive no Parlamento. Fui convidado para eventos e f\u00f3runs e ganhei pr\u00e9mios. At\u00e9 tenho o meu pr\u00f3prio neg\u00f3cio. \u00c9 apenas a ponta do ice burg!<\/p>\n

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

Oh, sem d\u00favida que me influenciou! As coisas que fa\u00e7o hoje em dia devem-se \u00e0 minha LGMD. Acho que n\u00e3o seria a mesma pessoa hoje se n\u00e3o fosse por isso.<\/p>\n

Sou muito mais paciente, de mente aberta e terra a terra, compreendendo que nem tudo vem sem desafios. Aprecio as coisas que ainda consigo fazer, como desenhar ou pintar, sabendo que um dia tamb\u00e9m posso perder essa capacidade. Mas terei sempre uma mente forte. Posso perder a capacidade de fazer coisas fisicamente, mas tenho uma mente forte e saud\u00e1vel e vou us\u00e1-la at\u00e9 ao dia em que morrer!<\/p>\n

Acho que sempre tive um forte desejo de ajudar as pessoas. Saber que um pouco de ajuda pode ser muito \u00fatil. Estou a entrar em aconselhamento e talvez em Arte-Terapia para ajudar quem precisa.<\/p>\n

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

Bem, isso \u00e9 f\u00e1cil. A LGMD \u00c9 UMA MERDA!!! A distrofia muscular da cintura escapular \u00e9 uma doen\u00e7a que causa fraqueza muscular. Os seus m\u00fasculos definham, n\u00e3o consegue ganhar ou aumentar a sua for\u00e7a. Os seus m\u00fasculos continuam a deteriorar-se com o tempo, o que pode tornar a vida extremamente dif\u00edcil. Nenhuma quantidade de exerc\u00edcio ou levantamento de pesos me ajudar\u00e1 a ganhar m\u00fasculo como um homem normal. \u00c9 o tipo de doen\u00e7a que vai sempre piorar com o tempo. N\u00e3o h\u00e1 cura, nem medicamentos para ajudar.<\/p>\n

Torna a vida dif\u00edcil de viver, especialmente quando os s\u00edtios n\u00e3o s\u00e3o acess\u00edveis a cadeiras de rodas. \u00c9 um obst\u00e1culo atr\u00e1s do outro!<\/p>\n

Se a sua LGMD pode ser <\/strong>\"<\/strong>curado\" amanh\u00e3, qual seria a primeira coisa que iria querer fazer<\/strong>?<\/p>\n

Abra\u00e7ava a minha m\u00e3e e os meus irm\u00e3os. Perdi a capacidade de abra\u00e7ar h\u00e1 muitos anos! Tamb\u00e9m saltava, saltava e saltava! Acho que me ia perder. Nem sequer saberia por onde come\u00e7ar, nem o que fazer!<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5507,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,35],"tags":[],"class_list":["post-5506","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2i"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Cyanne - 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=\"http:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2021\/09\/02\/cyanne\/\" \/>\n<meta property=\"og:locale\" content=\"pt_PT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Cyanne - 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