{"id":2781,"date":"2019-09-12T11:55:24","date_gmt":"2019-09-12T16:55:24","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2781"},"modified":"2019-09-12T11:55:24","modified_gmt":"2019-09-12T16:55:24","slug":"individual-with-lgmd-tasha-2","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pt\/uncategorized\/2019\/09\/12\/individual-with-lgmd-tasha-2\/","title":{"rendered":"Indiv\u00edduo com LGMD: Tasha"},"content":{"rendered":"

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

\"\"<\/figure>\n\n\n\n

Nome<\/strong>: Tasha              Idade<\/strong>: 46<\/p>\n\n\n\n

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

LGMD Sub-tipo<\/strong>: LGMD2L\n<\/p>\n\n\n\n

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

Foi-me diagnosticado aos 13 anos, mas tinha problemas desde os 8 anos.\nDiziam que eram dores de crescimento\ndores de crescimento e depois foram dados v\u00e1rios diagn\u00f3sticos errados. Aos 13 anos, os meus n\u00edveis sangu\u00edneos foram analisados\ne estavam fora do normal.<\/p>\n\n\n\n

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

Senti fraqueza e dores horr\u00edveis em ambos os m\u00fasculos da barriga da perna\ndepois de fazer exerc\u00edcio.<\/p>\n\n\n\n

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

Sim, o meu irm\u00e3o mais novo tem o mesmo diagn\u00f3stico de LGMD2L. Ele teve uma progress\u00e3o e um n\u00edvel de atrofia muscular totalmente diferentes\ne o n\u00edvel de atrofia muscular. A minha irm\u00e3 mais velha\nA minha irm\u00e3 mais velha n\u00e3o tem a doen\u00e7a. Ambos os meus\npais eram portadores.<\/p>\n\n\n\n

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

Os meus maiores desafios com esta doen\u00e7a s\u00e3o o cansa\u00e7o e a\ndores. E o facto de as pessoas n\u00e3o compreenderem.<\/p>\n\n\n\n

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

Continuar a trabalhar e a fazer exerc\u00edcio todos os dias.<\/p>\n\n\n\n

Como \u00e9 que a LGMD o influenciou a tornar-se a\npessoa que voc\u00ea \u00e9 hoje:<\/strong><\/p>\n\n\n\n

Depende! Fez com que me tornasse numa defensora de mim pr\u00f3pria e da minha sa\u00fade. Disseram-me que na idade adulta estaria numa cadeira de rodas, se n\u00e3o antes. Tamb\u00e9m me disseram para planear a minha carreira em conformidade. Depois disseram-me para parar todos os meus desportos e actividades. Aos 13 anos, isto teve efeitos profundos na minha inf\u00e2ncia, uma vez que eu praticava muito desporto e era muito bom a faz\u00ea-lo - especialmente futebol. Para n\u00e3o enlouquecer, ignorei o conselho do m\u00e9dico e fi-lo na mesma. Joguei futebol durante a faculdade e depois. Penso que me ajudou na minha atitude geral e no meu bem-estar f\u00edsico. Muitas vezes magoava-me e tinha dificuldades em andar depois, mas penso que, de um modo geral, me ajudou a manter-me saud\u00e1vel e a manter os meus m\u00fasculos activos. Continuo a fazer exerc\u00edcio e actividades ao ar livre, mas tenho um tempo de recupera\u00e7\u00e3o mais longo. Sou contabilista e sinto que isso se deve em parte \u00e0s minhas capacidades. Penso que a LGMD me tornou uma pessoa mais forte em geral. <\/p>\n\n\n\n

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

Em primeiro lugar, embora a consciencializa\u00e7\u00e3o tenha sido trazida para a ribalta, principalmente sobre a DM de Duchenne, isso deveu-se principalmente aos Telethons de Jerry Lewis todos os anos. H\u00e1 muitas outras formas de distrofia muscular que pessoas como eu t\u00eam.... que tamb\u00e9m precisam de investiga\u00e7\u00e3o. As pessoas est\u00e3o a sofrer e n\u00e3o h\u00e1 CURA! Al\u00e9m disso, com a LGMD, reparei que nem sempre \u00e9 evidente que as pessoas t\u00eam uma defici\u00eancia. Ou seja, .... tenho um aspeto totalmente normal, mas tenho v\u00e1rios problemas que as pessoas n\u00e3o reconhecem. Como n\u00e3o estou numa cadeira de rodas, algumas pessoas pensam que estou apenas a fingir. J\u00e1 n\u00e3o consigo subir escadas e tive de recusar muitas oportunidades de emprego porque n\u00e3o havia elevador.<\/p>\n\n\n\n

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

Eu diria ao mundo.....<\/p>\n\n\n\n

* Para ler mais \"LGMD Spotlight Interviews\" ou\npara ser volunt\u00e1rio numa pr\u00f3xima entrevista, por favor visite o nosso site\nem: https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a>  <\/p>\n\n\n\n

* Por favor, GOSTEI, COMENTEI e PARTILHEI este post para ajudar a aumentar a consciencializa\u00e7\u00e3o\nda LGMD!
\n
\n<\/p>","protected":false},"excerpt":{"rendered":"

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