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第329章 病友互助群(1 / 2)

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“你好,是慢粒病人的家属吗?”

简单的一句话,是或者不是,一两个字就可以回答,可是却让老白愣了半天。

说不是,那是打自己的耳光,如果说是的话,可能后面需要编无数个谎言来为这一个字圆谎。

犹豫间,素影又说话了。

“是不会打字吧?没关系,群里上岁数的人多,很多人都不太会用电脑,常发言说话的也就那么几个人,我们是一个慢粒患者互助群,在群里共享一些信息,交流一下病情,相互鼓励,相互加油,就是这样,如果有不懂的,可以随时来找我,不会打字也没关系,我的电话是xxxxxx……我们可以线下交流。”

老白想本能的回复一句谢谢,可是都输入完了,回车键却迟迟按不下去。

素未谋面的陌生人,甚至在网上都一个字没说,她先把自己的电话发了出来,或许为了只是给绝望的人一点温暖。

看着手机,老白捏呆呆发愣,这时,又一条消息弹了出来“孽龙请求添加为好友。”

孽龙?这一定是聂小龙的网名,老白摇头苦笑,点了同意。

“哥!是你吗?一定是你!这个时候加群的没有别人!我就知道你一定会来的!”小龙显得很兴奋,隔着屏幕似乎都可以看见。

老白没办法,回道“只是好奇来看看。”

那边,小龙仿佛是看到了什么希望一样,兴致勃勃的为老白介绍,消息一条接一条的发过来。

“看看也好,我们这个群和其它群不一样,这里的人都可好了!刚才和你说话的‘素影’,是我们群管理,我们都叫苏大姐,热心肠,群里不管是谁有什么事都是她张罗!”

“还有一个管理,冰成衣,取义久病成良医的意思,群里面外号叫假大夫,本身也是慢粒患者,十多年了,对这个病方方面面,几乎没有不懂的!病理、『药』理,还有国内外最新的研究成果,说是假大夫,有时候比真大夫都管用!”

“大马猴,他不是管理,不过也是群里的大名人,线下活动的时候我见过,瘦的皮包骨头,一嘴大黄牙,我们都叫他猴叔!猴叔身上下都是主意,蔫坏蔫坏的!怎么办低保,怎么买『药』省钱,怎么用信用卡买『药』攒积分,不管是谁,经他指点一番,准能剩下点钱,有时候枪爷公司的事拿不定主意也去问他!”

“枪爷,是咱群里唯一一个有钱人,干工程的,买卖挺大!一个月两万多的『药』费在人家那里不是问题,而且他还总接济群里买不起『药』的病友,也是个大好人!”

“那个肖医生是真正的医生,在医大一院的血『液』科,有时候我们群里会讨论买国外的仿制『药』,甚至原料『药』的问题,所以他不方便发言,只是偶尔会普及一些慢粒疾病的相关知识,有新的病友他也会拉到群里来,介绍给大家认识。”

“小灵通,她是父亲得了慢粒白血病,消息最灵通!哪有慈善机构有慢粒援助项目了?哪个医院为了临床研究招募确诊患者了?或者是哪里把慢粒纳入医保什么的,总是她最先告诉大家,帮了群里不少人呢!”

小龙滔滔不绝,信息一条接一条的发过来,群里四百多人,似乎每一个他都认识。老白注意到,群里所有的管理员他都介绍了,但唯独没介绍群主。

群主没在线,名字是灰『色』的,id叫老山羊。

“老山羊呢?”

之前十分活跃的小龙突然沉默了,半晌才发来一条消息老山羊已经不在了。

在新『药』“伊马替尼”发明以前,慢粒白血病病人的生存期只有三到五年,现在好了,患者十年的生存率高达93,也就是说只有不到7的病人活不到十年。

不过,对于没钱买『药』的人来说,死亡率是100。

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