{"id":1765,"date":"2018-03-21T12:07:30","date_gmt":"2018-03-21T17:07:30","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1765"},"modified":"2018-03-21T12:07:30","modified_gmt":"2018-03-21T17:07:30","slug":"ralph-2","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2018\/03\/21\/ralph-2\/","title":{"rendered":"INDIV\u00cdDUO COM LGMD: Ralph"},"content":{"rendered":"

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

Nome<\/strong>: Ralph\u00a0\u00a0\u00a0 IDADE<\/strong>: 58 Anos. Idade\"\"<\/a><\/p>\n

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

LGMD Sub-tipo:\u00a0 <\/strong>LGMD2L \/ Anoctaminopatia<\/p>\n

 <\/p>\n

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

Comecei a ter sintomas aos 47 anos, em 2006, e o diagn\u00f3stico foi feito em 2011, quando foi descoberta a LGMD2L.<\/p>\n

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

Fraqueza nas pernas. Eu era um grande halterofilista e, na casa dos 30 anos, fazia supino com 90 quilos e agachamento com 90 quilos. Mas senti uma fraqueza na perna esquerda e fui para o gin\u00e1sio e tentei fazer leg press com uma perna de cada vez. A minha perna direita era capaz de fazer 250 kg, mas a esquerda n\u00e3o chegava aos 150 kg.<\/p>\n

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

Tenho um irm\u00e3o confirmado com 2L. Pode haver outros, mas ainda n\u00e3o sabemos.<\/p>\n

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

Desloca\u00e7\u00e3o em todas as situa\u00e7\u00f5es. As escadas s\u00e3o dif\u00edceis. Levantar-se de uma cadeira \u00e9 dif\u00edcil. Andar a p\u00e9 \u00e9 poss\u00edvel, mas est\u00e1 a tornar-se cada vez mais dif\u00edcil para dist\u00e2ncias mais longas. E as quedas acontecem sempre que os joelhos se dobram, trope\u00e7a-se ou escorrega-se.<\/p>\n

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

Tenho trabalhado muito na \u00e1rea da defici\u00eancia, incluindo atualmente o Comit\u00e9 Consultivo Comunit\u00e1rio Nacional da MDA e o trabalho com v\u00e1rias outras organiza\u00e7\u00f5es, ao mesmo tempo que dou in\u00edcio \u00e0 Funda\u00e7\u00e3o LGMD2L.<\/p>\n

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

Quando olhamos para o que considero ser a minha maior realiza\u00e7\u00e3o, podemos dizer que o facto de ter LGMD2L me levou a trabalhar para muitas pessoas com defici\u00eancias de todos os tipos.<\/p>\n

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

Que estamos cada vez mais perto de alguns tratamentos e curas reais e que, se todos trabalharmos em conjunto, esta conquista da poss\u00edvel erradica\u00e7\u00e3o da distrofia muscular ajudar\u00e1 muitas pessoas e fam\u00edlias, presentes e futuras.<\/p>\n

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

Voltaria a fazer exerc\u00edcio f\u00edsico como na minha juventude e concentrar-me-ia em desenvolver uma verdadeira for\u00e7a e sa\u00fade, enquanto desfrutava de viagens e das belezas do mundo.<\/p>\n

 <\/p>\n

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

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

LGMD \u201cSPOTLIGHT INTERVIEW\u201d Name:\u00a0 Ralph\u00a0\u00a0\u00a0 AGE: 58 Yrs. 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