高县金线岭网友社区
标题: 一封来自山区的求助信 [打印本页]
作者: 风之舞 时间: 2006-12-16 21:42
标题: 一封来自山区的求助信
尊敬的各位父老乡亲:
高县罗场镇和平小学三年级有一名学生,叫罗锐。现年9岁,家住罗场镇桐林村。学习成绩一直名列全班前茅,曾多次被评为优秀少先队员。可是,就是今年的11月,厄运悄悄地降临到了她的头上。一天,她头痛发烧,父亲带到村医院看病,医生认为是贫血,经治疗不见起色。而且精神状态越来越差。在父母的陪同下,她来到宜宾市第二人民医院检查,12月11日,医生初步诊断为败血症,因经济拮据,后转院到高县第一人民医院。据医生介绍,这种病大约要用十多万元。而小罗锐一家每年的收入也不过区区几百元,连到宜宾检查的费用都是东凑西借来的。到现在家里已经只剩下明年的口粮了,哪儿还有钱医治呢?可小罗锐躺在高县医院的病床上时,还在问自己的父亲:“爸爸,我好久去读书哦?”……
各位论坛上的朋友,一位年仅9岁的孩子,一位那么渴望读书的孩子,怎么能得这样的病呢?现在,和平小学的孩子,教师都在积极的为她捐款,给她写信,还有的为她出谋划策,东奔西走……我是该学校的一名教师,我也不忍看到一个鲜活的生命就这样离我们而去,可我又能怎么办呢?命在旦夕的她又能怎么样呢?求援,求援!紧急求援!!!!
续帖1:12月18日,罗父再次奔赴宜宾二医院,拿到了医院的诊断证明书,经专家会诊,最终确诊为“系统性红斑狼疮”,建议住院治疗或长期门诊治疗。可是拮据的经济已经让罗锐一家从高县返回了罗场,每天到医院输液以缓解病痛。今后长期的医疗费用不会是一笔小数目。小罗锐一家感谢各位的关注和支持,同时,由于自己的失误,造成各位的担心和精神损失,致以诚挚的道歉。敬请各位原谅!!
小罗锐联系电话:08315251306(附近宁三娃家的电话转罗正湘接)
此图转自ybwbyxs的帖子:"病中的罗锐 ".在此感谢!

[此贴子已经被作者于2006-12-19 18:33:02编辑过]
作者: 绝地 时间: 2006-12-16 21:54
大家想想办法,我先给你置顶。
作者: 风之舞 时间: 2006-12-16 22:05
谢谢管理员,我代表学生和家长谢谢你!![em04]
作者: 符江新诚摄影 时间: 2006-12-16 22:12
应该关注哈
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作者: ybwbyxs 时间: 2006-12-17 11:06
昨天我见到了孩子,确实很可怜,但是孩子的病好象不是所说的败血症,而是红斑狼疮,有待明天医院的诊断证明.
作者: 风之舞 时间: 2006-12-17 12:20
谢谢你的关注
[此贴子已经被作者于2006-12-19 18:34:20编辑过]
作者: ybwbyxs 时间: 2006-12-17 12:50
风之舞说:“我已经看过她的诊断证明和检验报告,确实是败血症”
据本人了解,罗锐目前只有宜宾市第二人民医院的“检验报告单”(没有医院的诊断证明,因为她的父母以为只要有报告单就行了,)不是内行根本看不懂。据罗锐的父母介绍:医生看了报告单也说是红斑狼疮。
争论都是处于对孩子的关心,本人不是医生也不懂医学,只想在弄清楚病情之后能尽一分力量为孩子奔走呼吁。
明天(18日),罗锐的父亲将再次赴宜宾开加盖有市二医院公章诊断证明,罗锐到底是“败血症”还是“红斑狼疮”将不再是争论的焦点。
作者: 绝地 时间: 2006-12-17 13:42
楼主要把相关材料准备好,如果要发倡议一定要资料齐。
作者: 夜饮石门 时间: 2006-12-17 16:10
请尽快将小罗锐的相关资料(病历\诊断证明\户口\村证明\学校证明等)齐备,与本站联系,金线岭的朋友们对孩子绝对不会坐视不管的.尽快..........
作者: 阳光女孩 时间: 2006-12-17 19:07
大家都来关注吧
作者: ♂天意洛神♂ 时间: 2006-12-17 21:10
希望能把关心落实到行动上,
不要只是单纯的精神上的怜悯!
救救孩子!!!
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作者: 江心小洲 时间: 2006-12-18 17:56
罗场镇中心校少先队大队部已经发出倡议,期待您的参与……
作者: 雨桐 时间: 2006-12-18 21:27
据我专业说知,败血症多是因严重感染所致,而白血病才需骨髓移植,红斑狼疮须终身服药的严重免疫系统疾病!
这个不幸的女孩不管是什么病都值得大家关注,但也要先搞清楚,不要闹了小笑话哈!
作者: 风之舞 时间: 2006-12-19 18:35
续帖1:12月18日,罗父再次奔赴宜宾二医院,拿到了医院的诊断证明书,经专家会诊,最终确诊为“系统性红斑狼疮”,建议住院治疗或长期门诊治疗。可是拮据的经济已经让罗锐一家从高县返回了罗场,每天到医院输液以缓解病痛。今后长期的医疗费用不会是一笔小数目,小罗锐一家感谢各位的关注和支持,同时,由于自己的失误,造成各位的担心和精神损失,致以诚挚的道歉。敬请各位原谅!!
作者: 夜饮石门 时间: 2006-12-19 19:40
为什么称红斑狼疮
系统性红斑狼疮(SLE)是一种原因不明、具有多系统、多器官损害的自身免疫性疾病;最常累及皮肤、关节、肾脏、脑和血液等器官或系统。
“红斑狼疮”这一病名是从西方医学拉丁文翻译而来。1828年,法国皮肤科医生贝特首先报道了这样一个病人:面部出现像被狼咬过后不规则的水肿性红斑,呈中间凹陷,边缘突起,表面光滑,有时带有鳞屑。因狼与狼打架的时候,常常用锋利的牙齿撕咬对方的面部,把对方的面部咬得血淋淋的;以后就形成了大片的红色瘢痕。患红魔狼疮病人面部的皮疹,与狼打架时咬伤的面部瘢痕相似,故医学家们把该病形象地称之为“红斑狼疮”。以后随着临床经验的积累,越来越多的医生发现“红斑狼疮”不仅仅有皮肤损害,而且还有脑、心、肺、关节、肾、血液、肌肉等全身性病变。100多年前,美国医生奥斯勒提出了“系统性红斑狼疮”这一病名。
在临床上,常将红斑狼疮分为两种类型:病变仅限于皮肤者称为“盘状红斑狼疮”;有内脏多器官、多系统受累的则称为“系统性红斑狼疮”。持久不愈的盘状红斑狼疮有可能发展为系统性红斑狼疮。而系统性红斑狼疮病人,可以出现盘状狼疮样的皮疹,也可以没有皮肤损害;所以在确诊为盘状红斑狼疮之前,有必要作血常规、尿常规、肾功能等检查,以排除伴有内脏损害的系统性红斑狼疮。
作者: 夜饮石门 时间: 2006-12-19 19:42
系统性红斑狼疮的知识
系统性红斑狼疮是一种原因不明的、累及多系统多脏器的、具有多种自身抗体的自体免疫性疾病。
诊断要点
(1)多见于20~40岁女性,常有对日光及许多药物过敏史,部分患者家族倾向。
(2)起病缓慢,早期多有乏力、消瘦、关节酸痛等。
(3)发热:多为热型不定的无寒战低热,抗生素及抗病毒治疗无效,对糖皮质激素或非甾体类解热敏感。
(4)皮肤粘膜:80%有皮肤损害,最常见多形性、对称性皮疹,可累及全身各个部位,面部及手部多见。面部红斑好发于鼻颊两侧,呈蝶形分布,缓解期红斑可消退留有棕黑色素沉着。指甲周围红斑,具特征性。也可有盘状红斑损害。如伴有血小板减少或皮肤血管病变,可表现为紫癜性淤斑。15~20%的患者有雷诺现象,活动期可见口腔粘膜溃疡,常见脱发。
(5)关节、肌肉表现:90%以上的患者关节受累,多数为中、小关节,呈对称性非畸形性的关节肿胀、压痛。50%患有肌痛,但无肌萎缩。
(6)浆膜病变:1/3以上有胸膜炎和胸腔积液,约1/4的患者有心包积液多呈小至中等量。
(7)肾脏病变:见乎所有的患者均有狼疮性肾炎,主要表现有蛋白尿、血尿、管型尿,高血压、浮肿及氮质血症,最终出现肾功能衰竭。病理分型可为:①系膜型:此型电轻预后好;②膜型:主要表现为肾病综合征,③局灶型:极少发生肾功能衰竭;④弥漫增殖型:此型电严重。
(8)心脏病变:约有10%累及心脏,以心包炎最常见。体检时有心包摩擦音,血性心包积液,缩窄心包炎,少数患者可出现心包填塞征象。有心律紊乱,奔马律者揭示心肌受累。心脏受累严重者可全心扩大,心功能不全。
(9)血管病变:主要有血栓性静脉 炎、闭塞性脉管炎、冠状动脉炎。
(10)肺部病变:可见间质性肺炎,肺蜕有斑状浸润,激素治疗可使阴影消除。X线可出现片状肺不张。
(11)消化道病变:部分患者有肝脾肿大,但黄疸少见,有时可见急腹症发作,偶见腹肌炎或肠血管炎引起的肠溃疡、肠坏死、肠穿孔、肠梗阻等。
(12)神经、精神病变:主要表现为癫痫、脊髓炎、神经抑郁和痴呆等。
(13)其他:视乳头水肿、[视网膜和角膜病变,浅表淋巴结肿大。全身红斑狼疮也可同时与其他结缔组织病并存(如干燥综合征)。
作者: 夜饮石门 时间: 2006-12-19 19:43
系统性红斑狼疮概述
【概述】系统性红斑狼疮(sy′stemie lupus ery- thematosus,SLE)是一种涉及许多系统和脏器的全身结缔组织炎症性疾病,可累及皮肤、浆膜、关节、肾及中枢神经系统等,并以自身免疫为特征,患儿体内存在多种自身抗体,不仅影响体液免疫,亦影响细胞免疫,补体系统亦有变化。近年来,由于实验室检测技术的发展,临床诊断水平的提高,本病的发病数增多,仅次于儿童类风湿关节炎,居小儿全身性结缔组织病中的第2位。北京儿童医院于1977年至1992年共收治100例红斑狼疮,以学龄儿童为多见,7岁以上者占96%,婴幼儿仅属偶见,但也可见于新生儿。本病以女性多见,男女之比为1:4。
作者: 夜饮石门 时间: 2006-12-19 19:45
系统性红斑狼疮应注意什么问题
当病人得知患了系统性红斑狼疮后,常常谈虎色变,心里一下子不能承受,产生悲观失望情绪。这时病人最需要的是得到医生、家属、亲朋好友、同事的鼓励,给予精神上的支持。使他们充分认识到,系统性红斑狼疮的病因虽至今未明,这为本病的根治带来困难,但近年来,由于科学的发展,认识的提高,实验方法的进步,加上新的药物不断出现,使系统性红魔狼疮得以早发现、早治疗,5年生存率达90%以上,10年生存率也达到84%。因此,系统性红斑狼疮已不是不治之症。病人应有长期对待该病的思想准备,树立战胜疾病的信心,时刻注意病情变化,定期复查:活动期应每月复查,稳定后可每两三个月复查,再稳定后也不应少于每半年复查一次,听从医生根据复查结果给予的指导意见。进行正规治疗,就可以使病情长期缓解,甚至完全可以像正常人一样工作、生活。病情长期缓解者方可试行停药。
在急性活动期应以卧床休息为主,但当药物已能充分控制症状时,应鼓励其活动,以后可根据情况参加适当社会活动和工作,儿童尽可能复学。应注意劳逸结合。饮食最好是低脂肪膳食。
有光过敏的病人,应避免皮肤直接暴露于阳光,可用阳伞或草帽,穿长袖衣服或局部用对氨苯甲酸保护皮肤。
有雷诺现象的病人应注意保暖,适当服用血管扩张药物在疾病活动期应避免妊娠,避孕药宜用只含孕激素或雌激素含量很低的避孕药,或采用其他避孕方法,如用阴道隔膜等,雌激素有可能引起狼疮复发。从未生育者,在病情稳定未满1年,未经医生同意,应避免妊娠。当病情长期控制或缓解后,可以考虑婚姻和生育。
病人除必须用的药物外,切忌随意用药。除很多药能引起药物性狼疮外,近年不断有报道一些新药引起狼疮表现或狼疮加重,如降血压的卡托普利,α或γ—干扰素等
作者: 夜饮石门 时间: 2006-12-19 19:45
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[此贴子已经被作者于2006-12-19 19:47:36编辑过]
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