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主题:给无力者力量

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  发贴心情 Post By:2003/9/29 16:50:57

回复都达到100了,好家伙,这可是MDA论坛的第一高楼哦!图片点击可在新窗口打开查看呵呵,发个帖子记念一下:)

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  发贴心情 Post By:2003/9/30 20:07:47

中国残疾人联合会的领导: 欣闻中国残疾人第四次全国代表大会在北京召开,向你们表示祝贺,看到中国残疾人事业在邓主席的领导下近年来取得了蓬勃地发展,作为一个残疾人,我感到无比欣慰。 我是一个神经肌肉疾病的患者,今年47岁,十岁左右发病至今病魔已经折磨了我近40年了。我们这种病比较特殊,患病人群相对较少(但在中国这样一个人口大国患病人群绝对数不小,大约有300万左右),但我们所面对的困难却比一般肢残者大。肌肉的进行性病变,不但影响四肢、全身的骨髂肌、面部肌肉,甚至会影响心肌和呼吸肌,使患者过早地离开人间。 神经肌肉疾病是遗传病,目前还属不治之症,但是全世界的科学家经过近20年的努力,在这一领域已经取得了重大的进展,科学家们正试图用先进的基因疗法和干细胞疗法来替换或修正患者体内有缺陷的基因,但在这一领域难见中国科学家的踪影。 因为这种疾病患者较少,所以公众知之甚少,连一些医疗机构也不知这为何病,有的患者为急于治病到处乱投医,结果搞得倾家荡产,病情照样恶化;有的患者家长已经生了一个患儿,还冒险生第二个,结果与医疗机构对簿公堂。 患者的生活、求学、求职、康复、婚姻等方面都受到了极大的限制。 几乎每一个发达国家都有自己的神经肌肉疾病协会,这些协会有些是政府办的,而更多的是民办的,通过向社会募集资金(今年美国神经肌肉疾病协会就通过大型娱乐活动募集到6050万美元),来开展对疾病的研究和广泛的社区服务,这些服务几乎深入到患者生活的方方面面,参加服务的人员不限于医务人员,还包括教育学家、心理学家、社会学家等各种专业人员。政府投资的力度也很大美国国会就曾批准拨款一亿美元进行神经肌肉疾病方面的研究。 作为一个老患者,我深深知道这一疾病给患者生理上、心理上、精神上造成的极大伤害,我代表我们患者向你们呼吁是否能考虑建立一个在中国残疾人联合会领导下的类似发达国家神经肌肉疾病协会的工作机构,来开展肌病的研究、防治、知识的普及宣传并开展全方位的社区服务,这不但能改善神经肌肉疾病患者的生存状况,而且因为这是一种遗传性疾病,通过这一工作还可提高中华民族的整体素质,同时也关系到中国生物医学治疗水平是否能赶上甚至超过世界先进水平。 目前上海有位姓朱的患者自费建立了一个神经肌肉疾病网站,来宣传神经肌肉疾病知识,同时也为患者提供一个交流平台,吸引了全国近300位患者,还有许多专家、志愿者和患者在帮助翻译外文资料,和为患者解疑答惑。但是如果没有一个正规的工作机构,这一工作是很难取得大的成效的。所以恳求领导能予以考虑! 不知我说的当否,请指正。 此致 敬礼 一个饱受肌病折磨的,不愿看见他年轻的病友重走他的老路的患者 LZX 2003年9月9日

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  发贴心情 Post By:2003/10/3 19:02:37

我来晚了,怎么也没人通知我来看帖子,回复了这么多页啊,是有史以来最高记录了吧 大家文采都这么好,我可写不出来,希望我们这个特殊群体能够得到更多的社会关注

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  发贴心情 Post By:2003/10/13 23:03:58

你好,我今年30了也是肌病的患者,我的心情与你一样,盼望着我们中国自己的生物医学家攻克这一难关,可是中国的国情与国外是不同的,说到底就是钱。我们的国家毕竟还不富裕,大哥说句实话:“我们这一代,恐怕是赶不上了,着急上火也没用,最主要是活得开心充实的同时我们能为下一代做点啥,不要一代又一代的出现更多的肌病患者,你说呢!”不过光你一个人的力量是不够的,我们是不是也能同过别的渠道让他人引起重视呢?比如媒体【特别是CCTV】,全国300万患者的数据就足以引起国人的重视,好了就说到这,也不知对不对,祝这位大哥身体健康,让我们一起努力吧!让这世界不在有肌病!!!!图片点击可在新窗口打开查看图片点击可在新窗口打开查看图片点击可在新窗口打开查看

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  发贴心情 Post By:2003/10/14 14:02:16

谢谢你,我们每一位患者都应该像你的名字一样,坚持到底。

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  发贴心情 Post By:2003/11/7 21:10:55

MD patients in focus http://www.mdachina.org/detail_tabloid.asp?ID=263 http://english.eastday.com/epublish/gb/paper1/1076/class000100005/hwz167242.htm

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  发贴心情 Post By:2003/11/7 21:13:52

MD patients in focus -------------------------------------------------------------------------------- The city's medical experts and social workers are calling for establishing an association for patients suffering from neurological and muscular disorders and their families. The West already has various governmental and non-governmental organizations supporting patients and their families, especially during the tough period when patients get weaker and weaker. However, China lags behind on the issue, according to the Neuro-Muscular Disease Association of China. Muscular dystrophy is a broad term that describes genetically inherited disorder of the muscles. It causes the muscles to become very weak with progressive disability and eventually loss of life. At present, the global incidence of MD is one in every 3,000 to 4,000 people, and there is as yet no cure for it. The World Health Organization has ranked the disease as one of the five most serious global ailments, including AIDS and cancer, doctors said. "If a person is diagnosed with MD, it destroys the family," said Chen Minjuan, whose brother and two sons suffer from Duc-henne's muscular dystrophy. "I've felt so hopeless at times." Chen is not alone. Thousands of local families are feeling the same pain, pushing the association toward setting up a special organization to enhance medical research and provide patients and families with help. "The plan for setting up the body, the country's first, has been okayed by the Shanghai Federation for Disabled Persons. It's awaiting approval from the Ministry of Civil Affairs," said Zhu Changqing of the association and an MD patient herself. She said the new association will provide general education and updated information on research of the disease to patients. According to Zhu, some patients and their families have joined in preparatory work for the organization, translating foreign papers and sharing experiences. Shanghai Daily news --------------------------------------------------------------------------------

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  发贴心情 Post By:2003/11/7 21:14:05

MD patients in focus -------------------------------------------------------------------------------- Shanghai Daily news 4th Nov 2003 by Cai Wenjun Medical experts and social workers are calling for establishing an association for the group of patients and families suffering from neurological and muscular disorders along with the national and international healthcare professionals to enhance medical research and provide patients and families with more effective help. The preparatory committee of the Neuro-Muscular Disease Association of China, or MDA-China launched a meeting over the weekend, requiring the support from the medical community, government, health authority and the society. Muscular dystrophy is a broad term that describes genetically inherited disorder of the muscles. It causes the muscles to become very weak with progressive disability and eventually loss of life. At present, the disease incidence for DMD is one in every 3,000 to 4,000 people. There is no cure for the disease in the world. World Health Organiztion has ranked the disease as one of the five most serious ailments in the world as well as AIDS and cancer. ``The plan for set up the association has been permitted by Shanghai Federation for Disabled. It is under the examination of the nation''s federation and then it will be given to Ministry of Civil Affairs for approval,''''said Zhu Changqing, executive director of the committee and a MD patient by herself. The west has already launched wide-range of research and organized various governmental and non-governamntal association to support the patients and their families to experience the tough period witness the patients getting weaker and weaker. However, China is far lagging behind on the diagnosis, treatment, research of MD. Moreover, the patients, their families and the public are lack of knowledge on the disease. Zhu said the association is to provide general education and updated information on the medical research of the disease to the Chinese patients and their families. It also aims to promote academic and medical research on the mechanisms, diagnostic prevention treatment of the disease. ``We will also enhance the communication among patients, health care professionals and scientists and to participate in national and international communities, volunteers, and any other life science organizations,'''' she added. ``When one person is diagnosed as MD, the family is destroyed,'''' said Chen Minjuan, whose brother and two sons were suffers of Duchenne''''s muscular dystrophy. ``I felt so painful and hopeless sometimes.'''' Zhu said the association is to arouse patients and their families'' confidence to compete with the disease. At present, there are 1,000-odd patients and their family members to participate in the preparation issues of the association by translating foreign documents and share their own experiences to peers. She said the information about the association is available on its website: www.MDAChina.org.
[此贴子已经被作者于2003-11-9 21:38:37编辑过]

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  发贴心情 Post By:2003/11/8 19:11:23

用金山词霸“对”了半天,总算明白了个大概,看来真该学点英语了……

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  发贴心情 Post By:2003/11/8 20:17:51

这是一个令人振奋的消息。朱老师告诉记者,中国神经肌肉疾病协会筹建计划已获得上海市残疾人联合会的认可,正在等待民政部的批准。但愿我们肌病患者自己的家早日建成。有空我会把全文翻译出来,让更多的患者了解。 在这里说一声:朱老师,您辛苦了,向您表示敬意!

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