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저희 아버지가 루게릭에 걸리셨습니다.꼭좀 읽어주세요 부탁드립니다.

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작성자 환우가족 (121.♡.42.248) 작성일 10-06-01 15:34    조회 4,018회

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안녕하세요.

아주대병원에 전화해서 교수님께

상담받으려했지만 역시 전화로는 안된다고하네요..


저희 아버지께서 올해 1월 루게릭 진단을 받으셨습니다.

증상이 시작된건 2008년8월이니 좀있음 2년됩니다..

처음엔 왼쪽다리에 마비가 오셔서 걸으시는것만 좀 불편하셨는데

작년여름부터 심하게 악화되시더니

현재는 왼쪽다리와 팔은 거의 못쓰시고 그나마 힘이 남아있던

오른쪽다리와 팔도 점차 힘이 빠집니다...수저도 들기 힘들어하시구요..

이젠 혼자 침대나 의자에서 일어나시지 못합니다..

아직 언어나 호흡,식사는 괜찮은데..


그러다 얼마전 루게릭관련 뉴스를 보게됐는데

작년에 영국 Daval 이란 회사에서 개발한 치료제인 '에임스프로'를

알게됐습니다.

직접 영국에 전화를 걸어 문의를 했는데

FDA 승인도 받았고 먹는약이 아닌 주사로 맞는 앰플이더군요..

앰플한병당 100만원에 4일에 한번 맞아야 하는데

아직 한국에는 승인(?)이 나지 않은 상태라 구할수 없다고 합니다..

그러면서 그 회사에서 알려주는방법이

한국에 담당의사가 자기네 회사로 신청을 하면

그 담당의사와 관계를 맺는 제약회사에 약을 보내준다합니다.

연구용으로 보내는 거라 무료로 보낸다하구요..


그래서 며칠전 진단을 받은 병원 의사선생님께 부탁드리고자

찾아뵜는데 설명 다 듣지도 않으시고 이런약 해봐야 소용없다면서

매몰차게 거절하더라구요..

리루텍도 마찬가지로 FDA승인받은 약인데 소용없잖냐고..


안되겠다싶어 그래도 루게릭에 관심을 가져주시는 선생님께

부탁하는드리는것이 좀더 적극적으로 해주시지 않으실까 싶어

자문위원이신 교수님께 부탁드리려 합니다.


일단 이 약에 대해 들어보시거나 적용된 사례가 국내에 있는지 알고계신가요??

이 약에 관해선 어떻게 생각하시는지요..

제가 상담받으려고 교수님 신경과에 예약전화 넣었는데 몇시간째 통화량이

많다하여..

급한대로 이곳 자문위원장이신 아산병원 김광숙 교수님 예약을 잡아놨구요..

만약 다시 검사가 필요하다 하면 받을 생각입니다.

그리고 위 진행상황이면 어느정도 진행된건지도 궁금합니다..

답변 기다리겠습니다.부탁드립니다!


[첨부]
http://www.kalsa.org/bbs/bbs/board.php?bo_table=INFO_news&wr_id=96

http://www.metroseoul.co.kr/Metro.htm?Dir=Ne&Part=Real&Mode=View&idx=09200906015920020090601220725


http://www.davalinternational.com/

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