{"id":8006,"date":"2024-04-19T15:18:17","date_gmt":"2024-04-19T15:18:17","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=8006"},"modified":"2024-04-19T15:27:01","modified_gmt":"2024-04-19T15:27:01","slug":"8006","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2024\/04\/19\/8006\/","title":{"rendered":"INDIV\u00cdDUO COM LGMD: Amanda"},"content":{"rendered":"

\"\"<\/p>\n

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

Idade<\/strong>: 26<\/p>\n

Pa\u00eds<\/strong>: EUA<\/p>\n

LGMD Sub-tipo<\/strong>: LGMD2B\/R2 Relacionado com a disferlina<\/p>\n

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

Foi-me diagnosticado aos 14 anos.<\/p>\n

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

Os meus primeiros sintomas s\u00f3 apareceram por volta dos 20 anos. Foi nessa altura que comecei a notar verdadeiramente os sintomas de fraqueza\/atrofia muscular. Notei-os sobretudo em situa\u00e7\u00f5es em que utilizava a metade inferior do meu corpo, como escadas ou agachamentos. Para minha surpresa, tamb\u00e9m tinha dores significativas nos joelhos. Agora sei que tamb\u00e9m h\u00e1 atrofia muscular nesses joelhos.<\/p>\n

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

Eu n\u00e3o.<\/p>\n

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

Os meus maiores desafios mudaram muito nos \u00faltimos anos. Tenho a sorte de ainda ser ambulat\u00f3rio, embora tenha problemas de mobilidade.<\/p>\n

Atualmente, diria que o meu maior desafio fisicamente<\/em> \u00e9 a imprevisibilidade dos meus surtos e das minhas dores. A fadiga, a rigidez e a dor de in\u00edcio r\u00e1pido podem, por vezes, tornar muito dif\u00edcil trabalhar e viver a vida ao m\u00e1ximo.<\/p>\n

Os meus maiores desafios emocionalmente <\/em>seria o mist\u00e9rio do futuro e a quest\u00e3o de saber se vou conseguir ver uma cura durante a minha vida. Isto passa-me pela cabe\u00e7a a cada minuto que passa. Ao longo dos anos, tenho tido muita dificuldade em informar as minhas equipas m\u00e9dicas sobre a LGMD. Para al\u00e9m dos meus especialistas em medicina, os outros m\u00e9dicos\/enfermeiros\/pessoal m\u00e9dico normalmente n\u00e3o fazem ideia do que \u00e9 esta doen\u00e7a, o que \u00e9 incrivelmente cansativo do ponto de vista do doente.<\/p>\n

Qual \u00e9 o seu <\/strong>maior realiza\u00e7\u00e3o?<\/strong><\/p>\n

Quando me foi diagnosticada a LGMD, tive de abandonar todos os desportos que praticava, pois os m\u00e9dicos estavam preocupados com os meus n\u00edveis de CK e n\u00e3o sabiam que mais danos estava a causar. A LGMD 2B ainda era incrivelmente nova em 2012. Eu era muito atl\u00e9tico, pelo que deixar de praticar desporto me deixou de rastos. Mas depois decidi colocar toda essa energia a criar arte e a desenvolver o meu amor por ela. Acabei por encontrar todo o tipo de formas de arte que me interessavam e acabei por seguir uma delas como carreira.<\/p>\n

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

Para al\u00e9m da forma como a LGMD influenciou a minha carreira, eu diria que tamb\u00e9m mudou muito a minha mentalidade. Por muito injusto que seja, e \u00e9 MUITO injusto, os indiv\u00edduos com LGMD n\u00e3o t\u00eam outra hip\u00f3tese sen\u00e3o ajustar a sua mentalidade se quiserem encontrar a felicidade no meio desta doen\u00e7a. Estou sempre a trabalhar na minha sa\u00fade mental nesta \u00e1rea, e descobri que a terapia e uma comunidade de apoio t\u00eam sido grandes mudan\u00e7as.<\/p>\n

Por isso, recentemente, decidi lan\u00e7ar um blogue: HerChronicWellness.com<\/a> onde partilho momentos da minha jornada cr\u00f3nica para facilitar um pouco as jornadas cr\u00f3nicas dos outros. Estou tamb\u00e9m a iniciar uma sec\u00e7\u00e3o \"Em destaque\", para que outros possam partilhar as suas hist\u00f3rias cr\u00f3nicas e conselhos. N\u00e3o hesite em visit\u00e1-la!<\/p>\n

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

Quero que o mundo saiba tudo<\/em> sobre a LGMD! Mas sobretudo que o tempo \u00e9 essencial. Esta \u00e9 uma doen\u00e7a progressiva sem cura. Todos os casos de LGMD s\u00e3o diferentes, e eu considero-me um caso incrivelmente sortudo. As pessoas est\u00e3o a sofrer e a \u00fanica forma de encontrar uma cura \u00e9 sensibilizar e educar as pessoas nas nossas comunidades - os nossos m\u00e9dicos, os nossos colegas de trabalho, os nossos amigos e as nossas fam\u00edlias.<\/p>\n

Tamb\u00e9m gostaria que o mundo soubesse que, embora a LGMD tenha um aspeto diferente em cada pessoa, tamb\u00e9m tem um aspeto diferente para<\/em> todos todos os dias<\/em>. N\u00e3o posso garantir como \u00e9 que o meu corpo se vai sentir amanh\u00e3 e n\u00e3o posso prever como \u00e9 que isto vai evoluir com o tempo. O facto de ter feito algo ontem n\u00e3o significa que o possa fazer hoje. Infelizmente, o meu corpo \u00e9 mais imprevis\u00edvel do que o de uma pessoa normal.<\/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

N\u00e3o consigo decidir - porque h\u00e1 tanta coisa que eu gostaria de fazer! Sem d\u00favida que planeava uma viagem para esquiar. Planearia uma caminhada. Ia correr com o meu c\u00e3o. Fazia uma viagem de carro de 11 horas para ir ter com a minha melhor amiga ao Tennessee. Ia \u00e0 Disneyl\u00e2ndia e percorria todo o parque. Reservava um voo para Nova Iorque e passeava pela cidade inteira durante todo o dia. Inscrever-me-ia numa aula de gin\u00e1stica com os meus amigos. Iria patinar no gelo e aprenderia a andar de patins. Fazia todas as coisas que, em determinada altura, considerava garantidas, e muito mais.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":8005,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[23,124,16],"class_list":["post-8006","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-lgmd2b","tag-lgmdr2","tag-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Amanda - 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\/2024\/04\/19\/8006\/\" \/>\n<meta property=\"og:locale\" content=\"pt_PT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Amanda - 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