李治中：没数癌症患儿，只因为没出生在更发达的地区，就失去了生命 |《我是专家》主题演讲
<img src="https://mmbiz.qpic.cn/mmbiz_png/icEWN7K61eWamtY4riaAuK9FXJtBhicuW7EtSomqyCdlgfUibZYhWdULlmCicqnHZ9DfOC5z2fZvlSA9zad5xricJwZg/640?wx_fmt=jpeg&tp=webp&wxfrom=5&wx_lazy=1&wx_co=1" style="width: 50%; margin-bottom: 20px;"><p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">2021年4月24日，“科普中国-我是<span style="color: black;">专家</span>”第33期演讲现场，拾玉儿童公益基金会秘书长李治中博士<span style="color: black;">做为</span>嘉宾，带来演讲《送你一朵向日葵》。</span></p>
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<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><strong style="color: blue;"><span style="color: black;">以下为李治中演讲实录：</span></strong></span></p>
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<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">大众</span>好，我是李治中，笔名菠萝。我是一个癌症生物学家、一个科普作家和一个公益人。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">我本科毕业于清华大学，从2005年到2018年，在美国求学、工作、生活。2018年初，我和家人回到中国，与<span style="color: black;">伴侣</span><span style="color: black;">一块</span>创办了深圳市拾玉儿童公益基金会。<span style="color: black;">咱们</span>做的<span style="color: black;">第1</span>个项目叫做<span style="color: black;">『向日葵儿童』</span>，是一个专注于儿童肿瘤患儿、家长和医护的公益项目。</span></p><img src="https://mmbiz.qpic.cn/mmbiz_jpg/N2EssTUQcONth1mzSpgFOM3AuFS9LPBQfgmdGgYqUFv7KGfLycmpUM9N0OSzjSVs2pTJ43LHAXW8eKlg29JEhg/640?wx_fmt=jpeg&tp=webp&wxfrom=5&wx_lazy=1&wx_co=1" style="width: 50%; margin-bottom: 20px;">
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">李治中演讲照片</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><strong style="color: blue;"><span style="color: black;">为何</span>一个癌症生物学家</strong></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><strong style="color: blue;"><strong style="color: blue;">想做公益项目</strong></strong></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">重点</span>是<span style="color: black;">由于</span>两个数字。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">第1</span>个数字是</span><span style="color: black;"><strong style="color: blue;">30</strong></span><span style="color: black;"><strong style="color: blue;"><span style="color: black;">万</span></strong></span><span style="color: black;">和</span><strong style="color: blue;"><span style="color: black;">3万</span></strong><span style="color: black;">多。<span style="color: black;">全世界</span>每年超过30万<span style="color: black;">孩儿</span>被诊断出癌症，其中中国儿童超过3万。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">一说起癌症，<span style="color: black;">大众</span><span style="color: black;">广泛</span>比较恐慌，<span style="color: black;">况且</span>会觉得这是一个老年<span style="color: black;">疾患</span>。诚然，绝大<span style="color: black;">都数</span>的癌症<span style="color: black;">病人</span>都是中老年人，<span style="color: black;">然则</span>还有一小部分是<span style="color: black;">大众</span>意想不到的——14岁以下的<span style="color: black;">孩儿</span>。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">她们</span>得癌症的<span style="color: black;">原由</span>，绝大<span style="color: black;">都数</span>是<span style="color: black;">由于</span>先天基因突变。<span style="color: black;">因为</span>中国人数非常多，<span style="color: black;">因此</span>中国的肿瘤患儿人数<span style="color: black;">亦</span>非常庞大，每年新增确诊人数<span style="color: black;">已然</span>超过了3万。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">第二个更<span style="color: black;">要紧</span>的数据，是<span style="color: black;">存活</span>率。儿童肿瘤整体<span style="color: black;">存活</span>率是比较高的，在欧美发达国家，患儿整体<span style="color: black;">存活</span>率<span style="color: black;">已然</span>超过了</span><strong style="color: blue;"><span style="color: black;">80%</span></strong><span style="color: black;">。<span style="color: black;">然则</span>中国和<span style="color: black;">她们</span>的差距超过了20%，<span style="color: black;">此刻</span><span style="color: black;">存活</span>率可能还不到</span><span style="color: black;"><strong style="color: blue;">60%</strong></span><span style="color: black;">。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">这样的差距，直接<span style="color: black;">引起</span>在中国有几千个<span style="color: black;">孩儿</span>，每年<span style="color: black;">由于</span><span style="color: black;">无</span>接触到最好的医疗<span style="color: black;">前提</span>而失去了生命，这是非常可惜的。</span></p><img src="https://mmbiz.qpic.cn/mmbiz_png/N2EssTUQcONth1mzSpgFOM3AuFS9LPBQOSk7LEArrGY73v0m9LQsxg5lq31ceUm7ictTCqGvNXHGVG2bjCOWHug/640?wx_fmt=png&tp=webp&wxfrom=5&wx_lazy=1&wx_co=1" style="width: 50%; margin-bottom: 20px;"><span style="color: black;"><span style="color: black;">促进</span>李治中回国做公益的一组数据</span>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">这些数字<span style="color: black;">促进</span>我回到中国，创办了深圳市拾玉儿童公益基金会。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">今天我要给<span style="color: black;">大众</span>讲关于儿童癌症群体的四个故事。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><strong style="color: blue;">误诊：</strong></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><strong style="color: blue;"><strong style="color: blue;">信息不对<span style="color: black;">叫作</span><span style="color: black;">导致</span>的悲剧</strong></strong></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">第1</span>个故事的主角叫“黑马”，是我的同龄人，<span style="color: black;">亦</span>是一个父亲。他来自黑龙江，姓马，<span style="color: black;">因此</span><span style="color: black;">大众</span>叫他黑马。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">2013 、2014年的时候，<span style="color: black;">倘若</span><span style="color: black;">大众</span>在北京某个街头逛街，可能会碰到他正在卖烧烤。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">他<span style="color: black;">为何</span>要从黑龙江来到北京呢？<span style="color: black;">由于</span>他的<span style="color: black;">孩儿</span>得了一种非常罕见的肿瘤<span style="color: black;">疾患</span>，叫朗格汉（<strong style="color: blue;">朗格汉斯细胞组织细胞增生症</strong>），它的全名非常长，<span style="color: black;">大众</span>记住叫朗格汉就好了。</span></p><strong style="color: blue;"><span style="color: black;">知识点</span></strong><span style="color: black;">朗格汉斯细胞组织细胞增生症是一种罕见的组织细胞<span style="color: black;">疾患</span>，<span style="color: black;">平常</span>于儿童，发病高峰年龄为1~4岁，轻者仅<span style="color: black;">显现</span>自限性的单纯的骨、皮肤病变，重者可表现为致命的全身多器官或多系统病变。</span>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">成人<span style="color: black;">病人</span>预后要好于儿童，10年<span style="color: black;">存活</span>率约86%，高危组患儿的3年总<span style="color: black;">存活</span>率约72%，3年<span style="color: black;">没</span>事件<span style="color: black;">存活</span>率约46%，低危组患儿3年总<span style="color: black;">存活</span>率高达100%，3年<span style="color: black;">没</span>事件<span style="color: black;">存活</span>率约82%。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">（资料<span style="color: black;">源自</span>：</span><span style="color: black;">百度健康医典</span><span style="color: black;">）</span></span></p><img src="https://mmbiz.qpic.cn/mmbiz_png/N2EssTUQcONth1mzSpgFOM3AuFS9LPBQ65ym20coR41ah7XxHnkbjM82RRzJGgwaDWVhMMIsiaUEMVFiaDptbZRw/640?wx_fmt=png&tp=webp&wxfrom=5&wx_lazy=1&wx_co=1" style="width: 50%; margin-bottom: 20px;">
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">为了给<span style="color: black;">孩儿</span>看病，</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">黑马在北京街头卖起了烤鱿鱼</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">这个<span style="color: black;">孩儿</span>在两岁时，头上<span style="color: black;">起始</span>鼓起<span style="color: black;">有些</span>小包。他带<span style="color: black;">孩儿</span>去县医院看病，<span style="color: black;">大夫</span>说可能<span style="color: black;">便是</span>磕着了，回去热敷吧。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">但敷了一阵以后<span style="color: black;">发掘</span>完全不行，包越长越大，于是赶紧带<span style="color: black;">孩儿</span>去地级市医院，<span style="color: black;">乃至</span>最后去了省医院，依然<span style="color: black;">没</span>法确诊。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">有的<span style="color: black;">大夫</span>说，可能<span style="color: black;">便是</span>脂肪瘤，<span style="color: black;">不碍事</span>，是良性的。但其实完全不是良性的，后来<span style="color: black;">孩儿</span>的<span style="color: black;">状况</span>越来越糟。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">有一天小黑马<span style="color: black;">忽然</span><span style="color: black;">起始</span><span style="color: black;">显现</span>尿崩，这么一个小小的<span style="color: black;">孩儿</span>，<span style="color: black;">每日</span><span style="color: black;">必须</span>喝10多斤水，<span style="color: black;">由于</span>他总是感觉非常口渴，但一喝就尿，<span style="color: black;">况且</span>这种<span style="color: black;">情况</span><span style="color: black;">持续</span>重复。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">其实，有经验的<span style="color: black;">大夫</span>就会<span style="color: black;">晓得</span>，这是朗格<span style="color: black;">汉</span>比较典型的症状。<span style="color: black;">然则</span>很遗憾，基层的<span style="color: black;">大夫</span>，<span style="color: black;">包含</span>省级医院的<span style="color: black;">大夫</span>都不<span style="color: black;">认识</span>这个<span style="color: black;">疾患</span>，<span style="color: black;">因此</span><span style="color: black;">始终</span><span style="color: black;">无</span>确诊。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">总而言之，在14个月的时间里，黑马带着他的<span style="color: black;">孩儿</span>辗转于县医院、市医院、中医院、<span style="color: black;">女性</span>儿童医院、省医院，<span style="color: black;">乃至</span>北京的某大型三甲医院，都<span style="color: black;">没</span>法得到确诊。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">孩儿</span>被反复误诊，直到最后<span style="color: black;">由于</span><span style="color: black;">有些</span>机缘巧合，他才来到了北京儿研所，<strong style="color: blue;">专家</strong><strong style="color: blue;">看了一眼，就说：“我99%确定是朗格汉。”</strong></span></p><img src="https://mmbiz.qpic.cn/mmbiz_jpg/N2EssTUQcONth1mzSpgFOM3AuFS9LPBQPM2ZAYJoibOdMMfwVeOK4OnARUoAL4DB4dvKlCYTBKAaHFAx8LzDmIg/640?wx_fmt=jpeg&tp=webp&wxfrom=5&wx_lazy=1&wx_co=1" style="width: 50%; margin-bottom: 20px;">
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">小黑马在10多家医院</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">被误诊了一年多</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">后来做了<span style="color: black;">检测</span>确实是，<span style="color: black;">因此</span>小黑马立刻<span style="color: black;">起始</span>化疗，但<span style="color: black;">因为</span>耽误了这么久，他的治疗<span style="color: black;">已然</span>变得非常艰辛，不仅对<span style="color: black;">孩儿</span><span style="color: black;">熬煎</span>比<span style="color: black;">很强</span>，<span style="color: black;">况且</span>经济花费<span style="color: black;">亦</span><span style="color: black;">指的是</span>数性地<span style="color: black;">提升</span>。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">黑马当时新婚不久，带着辛辛苦苦攒下的6万块钱，到北京<span style="color: black;">火速</span>就<span style="color: black;">无</span>了。于是他<span style="color: black;">起始</span>到街头去卖烤鱿鱼，<span style="color: black;">白日</span>就在一个市场给人扛东西。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">这其实是中国<span style="color: black;">非常多</span>肿瘤患儿的缩影：<span style="color: black;">因为</span>信息不对<span style="color: black;">叫作</span>、反复误诊，给<span style="color: black;">孩儿</span>带来痛苦，给家庭带来经济<span style="color: black;">包袱</span>。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">倘若</span>能够<span style="color: black;">即时</span>确诊，像朗格<span style="color: black;">汉</span><span style="color: black;">这般</span>的<span style="color: black;">疾患</span>，治疗<span style="color: black;">花费</span>可能<strong style="color: blue;">不到10万块</strong>。<span style="color: black;">然则</span><span style="color: black;">由于</span>耽误了，黑马爸爸最后的经济<span style="color: black;">包袱</span><span style="color: black;">已然</span><strong style="color: blue;">接近百万</strong>。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">这是个非常庞大的数字，和10万之间有非常巨大差距。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">为何</span>会有这种反复的信息不对<span style="color: black;">叫作</span>、反复的误诊？</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">由于</span>中国<span style="color: black;">始终</span><span style="color: black;">败兴</span>，<strong style="color: blue;"><span style="color: black;">无</span>专业的儿童肿瘤的科普平台，</strong><span style="color: black;">因此</span><span style="color: black;">她们</span>很难找到准确的信息。<span style="color: black;">因此呢</span>，当<span style="color: black;">咱们</span>做<span style="color: black;">『向日葵儿童』</span>时，<span style="color: black;">第1</span>件事情<span style="color: black;">便是</span>想填平这个信息的鸿沟，做科普教育。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">针对<span style="color: black;">已然</span><span style="color: black;">患病</span><span style="color: black;">或</span><span style="color: black;">已然</span>到医院的<span style="color: black;">病人</span>，<span style="color: black;">咱们</span>做过<strong style="color: blue;">线下的科普讲座，还做过医院的就诊指南、出科普书、做绘本等等</strong>，尽所有的可能，告诉家长：什么是儿童肿瘤、它的生存率<span style="color: black;">怎样</span>、应该去什么医院治疗。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">当然更<span style="color: black;">要紧</span>的是<strong style="color: blue;">线上科普</strong>，<span style="color: black;">由于</span>绝大<span style="color: black;">都数</span>家长，在<span style="color: black;">发掘</span><span style="color: black;">孩儿</span>的<span style="color: black;">有些</span>症状后，都会到网上去寻找信息。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">因此</span><span style="color: black;">咱们</span>联合了200多位志愿者，搭建了全中国最大，<span style="color: black;">亦</span>是<span style="color: black;">日前</span><span style="color: black;">独一</span>的一个专业儿童肿瘤科普<span style="color: black;">网</span>：</span><span style="color: black;"><strong style="color: blue;">www.curekids.cn</strong></span><span style="color: black;">。这上面有超过100万字的科普资料。</span></p><a style="color: black;"><span style="color: black;"><img src="https://mmbiz.qpic.cn/mmbiz_jpg/N2EssTUQcONth1mzSpgFOM3AuFS9LPBQdxraRSicZ9nI8bA1x4RmVlxohD1niaicbKxHDumnF8TWheQALmvYmibicEQ/640?wx_fmt=jpeg&tp=webp&wxfrom=5&wx_lazy=1&wx_co=1" style="width: 50%; margin-bottom: 20px;"></span></a>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">点击查看<span style="color: black;">所有</span>科普手册</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">咱们</span>还覆盖了几乎所有的自<span style="color: black;">媒介</span>，从公众号、视频软件，到<span style="color: black;">博客</span>等等，竭尽了所有能力，让家长<span style="color: black;">没</span>论在任何<span style="color: black;">地区</span>，都能找到<span style="color: black;">咱们</span>，找到<span style="color: black;">可靠</span>的信息。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">我<span style="color: black;">尤其</span>想分享的一个项目，是<span style="color: black;">咱们</span><strong style="color: blue;">和搜索引擎的合作</strong>。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">中国80%<span style="color: black;">上下</span>的家长，在<span style="color: black;">孩儿</span><span style="color: black;">患病</span>以后，<span style="color: black;">第1</span>时间都是去网上搜索信息。<span style="color: black;">然则</span>，以前<span style="color: black;">倘若</span>你到网上去搜索“儿童肿瘤”，看到的几乎<span style="color: black;">所有</span>是垃圾信息、伪科学，<span style="color: black;">乃至</span>还有骗局，这<span style="color: black;">引起</span>了<span style="color: black;">非常多</span>问题。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">因此</span>2018年我回到中国后，<span style="color: black;">尤其</span><span style="color: black;">期盼</span>科普信息能在<span style="color: black;">各样</span>各样的搜索引擎，<span style="color: black;">例如</span>百度、搜狗上置顶。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">非常高兴，后来<span style="color: black;">咱们</span>得到了这些平台的支持，<span style="color: black;">她们</span>和<span style="color: black;">咱们</span>进行了一种公益的合作。<span style="color: black;">此刻</span><span style="color: black;">大众</span>再去百度搜索25个和儿童肿瘤<span style="color: black;">关联</span>的<span style="color: black;">重要</span>词，置顶的内容<span style="color: black;">再也不</span>是伪科学，而是<span style="color: black;">咱们</span>和临床专家<span style="color: black;">一块</span>制作的科普内容。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">上线短短6个多月后，就有<strong style="color: blue;">超过3000万</strong>的点击量，这超过了<span style="color: black;">咱们</span>的预期，<span style="color: black;">亦</span>超过了百度的预期。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">但再次说明，当<span style="color: black;">咱们</span>认真去做一件事，做一件有价值的事情时，它产生的影响可能会超过你我的想象。</span></p><a style="color: black;"><span style="color: black;"><img src="https://mmbiz.qpic.cn/mmbiz_png/N2EssTUQcONth1mzSpgFOM3AuFS9LPBQtz07AlWMedNiaichXoKibicQicncDqNEY4Ywf9ODpiaOasN9edFoibQtTdaeg/640?wx_fmt=png&tp=webp&wxfrom=5&wx_lazy=1&wx_co=1" style="width: 50%; margin-bottom: 20px;"></span></a><span style="color: black;">点击<span style="color: black;">照片</span>查看<span style="color: black;">更加多</span></span>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">小黑马的故事，有一个比较好的<span style="color: black;">结果</span>。他<span style="color: black;">此刻</span><span style="color: black;">恢复</span>了，回到学校<span style="color: black;">作为</span>一名四年级的学生，他的爸爸正在<span style="color: black;">奋斗</span>偿还债务。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">但<span style="color: black;">同期</span>，我觉得非常了不起的是，黑马爸爸创办了“朗格汉天使之家”，致力于<span style="color: black;">帮忙</span><span style="color: black;">更加多</span>像<span style="color: black;">她们</span><span style="color: black;">这般</span>的家庭、<span style="color: black;">这般</span>的<span style="color: black;">孩儿</span>获取准确的信息，让<span style="color: black;">她们</span>能<span style="color: black;">即时</span>得到救助。</span></p><img src="https://mmbiz.qpic.cn/mmbiz_jpg/N2EssTUQcONth1mzSpgFOM3AuFS9LPBQ1tKibcspWW0G5GLicnDLdficFPicHgX1oV2ekhCFmeZh0x70qdr5bybNKQ/640?wx_fmt=jpeg&tp=webp&wxfrom=5&wx_lazy=1&wx_co=1" style="width: 50%; margin-bottom: 20px;"><span style="color: black;">黑马和儿子</span>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">咱们</span>“<span style="color: black;">『</span><span style="color: black;">向日葵儿童</span><span style="color: black;">』</span><span style="color: black;">尤其</span>愿意，和<span style="color: black;">这般</span>的家长、<span style="color: black;">这般</span>的组织，<span style="color: black;">一块</span><span style="color: black;">奋斗</span>。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><strong style="color: blue;">没出生在更发达的地区</strong></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><strong style="color: blue;">看病就这么难吗</strong></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">第二个故事我想从东北转到西北。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><strong style="color: blue;"><span style="color: black;">雪儿是一个甘肃的小<span style="color: black;">女子</span></span></strong><span style="color: black;">，有一天她<span style="color: black;">忽然</span><span style="color: black;">显现</span>大便不畅，<span style="color: black;">保持</span>了<span style="color: black;">非常多</span>天都不行，家长把她带到医院，<span style="color: black;">一样</span>误诊了。<span style="color: black;">大夫</span>说她可能只是消化不良，回去随便吃点药就好了。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">结果完全不行，等到她的肚子长得像西瓜<span style="color: black;">那样</span>大时，再到医院做<span style="color: black;">检测</span>，直接把<span style="color: black;">大夫</span>震惊了。<span style="color: black;">通常</span>人去做体检时，肿瘤标记物的正常值是20，而雪儿的肿瘤标记物是1200，<span style="color: black;">已然</span>超过了60倍。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">后来她被诊断为<strong style="color: blue;">恶性卵黄囊瘤</strong>，<span style="color: black;">况且</span><span style="color: black;">已然</span>广泛地转移。可惜，在甘肃几乎<span style="color: black;">无</span><span style="color: black;">大夫</span>能治疗这种儿童肿瘤，<span style="color: black;">因此</span><span style="color: black;">大夫</span>告诉她的家长：不要治了，可能是人财两空。</span></p><strong style="color: blue;"><span style="color: black;">知识点</span></strong>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">卵黄囊瘤，又名内胚窦瘤、婴儿型胚胎癌，是一种高度恶性的生殖细胞肿瘤，<span style="color: black;">源自</span>于原始生殖细胞。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">卵黄囊瘤可能<span style="color: black;">出现</span>于性腺（睾丸、卵巢）或性腺外。性腺外的卵黄囊瘤比较少见，常<span style="color: black;">出现</span>于身体中线部位，婴幼儿<span style="color: black;">平常</span>于骶尾部和颅内。症状与肿瘤生长的部位、<span style="color: black;">体积</span>、生长速度<span style="color: black;">关联</span>。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">倘若</span>能<span style="color: black;">初期</span>诊断，并进行规范治疗，<span style="color: black;">按照</span>美国的统计，<span style="color: black;">存活</span>率<span style="color: black;">达到</span>到90%以上。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">（资料<span style="color: black;">源自</span>：</span><span style="color: black;">百度健康医典</span><span style="color: black;">）</span></span></p><a style="color: black;"><span style="color: black;"><img src="https://mmbiz.qpic.cn/mmbiz_png/N2EssTUQcONth1mzSpgFOM3AuFS9LPBQss9IzvFgmppZwwAyAHOkP3qTKrjuN0K2nOEPqhTibpaU4iaREKwib5TvA/640?wx_fmt=png&tp=webp&wxfrom=5&wx_lazy=1&wx_co=1" style="width: 50%; margin-bottom: 20px;"></span></a>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">点击<span style="color: black;">照片</span>查看雪儿的故事</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">但可能茫茫中自有注定，雪儿的父亲在杭州工作，有一天她父亲在坐出租车时，非常意<span style="color: black;">外区</span>听到了广播，一个关于儿童肿瘤的科普。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">而后</span>他<span style="color: black;">晓得</span>了，在浙江杭州，有<span style="color: black;">大夫</span>对这种儿童肿瘤非常<span style="color: black;">善于</span>，于是他带着女儿的病历来到<span style="color: black;">大夫</span>那儿。<span style="color: black;">大夫</span>看了一下说：可能还有救，我给你出个<span style="color: black;">方法</span>，你回甘肃去治，<span style="color: black;">这般</span>比较省钱。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">然则</span>，<span style="color: black;">她们</span>在甘肃找遍<span style="color: black;">大夫</span>，却不<span style="color: black;">晓得</span>谁能来治<span style="color: black;">这般</span>的肿瘤，<span style="color: black;">因此</span>最后雪儿还是又拖着病体，从甘肃来到杭州治疗。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">此刻</span>雪儿<span style="color: black;">已然</span><span style="color: black;">恢复</span>了，是一个非常<span style="color: black;">美丽</span>乖巧的小<span style="color: black;">女子</span>。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><strong style="color: blue;">但</strong><strong style="color: blue;">在中国，有<span style="color: black;">没</span>数个像她<span style="color: black;">同样</span>，可能<span style="color: black;">咱们</span>永远都不<span style="color: black;">晓得</span>名字的人，只是<span style="color: black;">由于</span>出生在中西部，而不是在北京、上海等医疗发达的城市，就失去了生命。</strong></span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">因此</span>，这是<span style="color: black;">另一</span>一个<span style="color: black;">引起</span>中国肿瘤患儿整体<span style="color: black;">存活</span>率低的<span style="color: black;">原由</span>。不是<span style="color: black;">咱们</span>一线城市医疗水平不行，而是<span style="color: black;">咱们</span>其他<span style="color: black;">地区</span>太弱了。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">不仅是甘肃，你去青海、新疆，以及<span style="color: black;">非常多</span>边远地区，会<span style="color: black;">发掘</span>可能全省都<span style="color: black;">无</span>一个专业的儿童肿瘤科室。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">因此</span><span style="color: black;">咱们</span>想做的第二件事情，<span style="color: black;">便是</span><strong style="color: blue;"><span style="color: black;">帮忙</span>这些<span style="color: black;">地区</span>培养<span style="color: black;">大夫</span></strong>。</span></p><a style="color: black;"><span style="color: black;"><img src="https://mmbiz.qpic.cn/mmbiz_png/N2EssTUQcONth1mzSpgFOM3AuFS9LPBQw17qDKHcm6bW4aGpK44cjpN6bMYC7t6PkQ0WsQKmoAXrGXwX76wpzQ/640?wx_fmt=png&tp=webp&wxfrom=5&wx_lazy=1&wx_co=1" style="width: 50%; margin-bottom: 20px;"></span></a>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">点击查看</span><span style="color: black;">青海大学<span style="color: black;">附庸</span>医院</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">医护进修结业<span style="color: black;">报告</span></span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">咱们</span>做的<span style="color: black;">第1</span>个项目，是支持青海大学<span style="color: black;">附庸</span>医院的一位<span style="color: black;">大夫</span>和两名护士，到山东大学<span style="color: black;">附庸</span>山东省肿瘤医院进修，<span style="color: black;">由于</span>那里有非常庞大、非常专业的儿童肿瘤科室。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">此刻</span>，她们<span style="color: black;">已然</span>结束了为期半年的进修，回到工作岗位。我相信她们的所学所得，<span style="color: black;">必定</span>会<span style="color: black;">帮忙</span><span style="color: black;">更加多</span>青海的<span style="color: black;">孩儿</span>得到<span style="color: black;">即时</span>治疗。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">当然进修只是<span style="color: black;">第1</span>步。下一步，<span style="color: black;">咱们</span>还要继续支持她们的学习，还要帮她们搭建远程会诊系统。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><strong style="color: blue;"><span style="color: black;"><span style="color: black;">咱们</span><span style="color: black;">最后</span>的<span style="color: black;">目的</span>，是<span style="color: black;">期盼</span>一个<span style="color: black;">孩儿</span>，<span style="color: black;">没</span>论在甘肃、青海，还是在北京、上海、杭州，都能接受到<span style="color: black;">同样</span>的规范化的治疗，<span style="color: black;">这般</span><span style="color: black;">孩儿</span>的<span style="color: black;">存活</span>率才有可能<span style="color: black;">加强</span>。</span></strong></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><strong style="color: blue;">癌症患儿</strong></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><strong style="color: blue;"><strong style="color: blue;">不止要面对生理痛苦</strong></strong></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">咱们</span>第三个故事，转向西南。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">在昆明，一个叫小璞的<span style="color: black;">孩儿</span>，得了<strong style="color: blue;">伯基特淋巴瘤</strong>。<span style="color: black;">因为</span><span style="color: black;">长时间</span>住院，他身体非常瘦弱，<span style="color: black;">况且</span>内心非常自卑，<span style="color: black;">因此</span>基本不说话。到了医院以后，和他的父母都不说话。</span></p><strong style="color: blue;"><span style="color: black;">知识点</span></strong>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">伯基特淋巴瘤是儿童恶性淋巴瘤中最<span style="color: black;">平常</span>的类型。</span><span style="color: black;">起病急、发展快、侵蚀强和恶性度高。</span><span style="color: black;"><span style="color: black;">重点</span>表现为浅表淋巴结肿大，颌面肿物或因腹部肿块<span style="color: black;">引起</span>的急性腹部症状等。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">对伯基特淋巴瘤的治疗，是<span style="color: black;">按照</span>不同病理类型和分期<span style="color: black;">选取</span>不同的<span style="color: black;">方法</span>和疗程，以高剂量、短疗程、脉冲式治疗为主。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">病人</span>五年<span style="color: black;">没</span>事件<span style="color: black;">存活</span>率达到80%以上，低危组接近100%。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">（资料<span style="color: black;">源自</span>：百度健康医典）</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">这<span style="color: black;">便是</span>非常典型的，生了肿瘤的<span style="color: black;">孩儿</span>面临的挑战——他认为自己是家里的“拖油瓶”，一文不值，完全是社会的拖累。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">因此</span>，在治疗肿瘤<span style="color: black;">孩儿</span>时，<span style="color: black;">咱们</span>还面临一个挑战，<span style="color: black;">便是</span><span style="color: black;">必须</span>在<strong style="color: blue;">治肿瘤的<span style="color: black;">同期</span>，治疗<span style="color: black;">她们</span>的心理</strong>。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">然则</span>医院里的<span style="color: black;">大夫</span>护士都太忙了，自己连喝水、吃饭、睡觉都顾不得，怎么会有时间来一个一个关心<span style="color: black;">孩儿</span>的心理。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">怎么办？其实有办法，这个解决<span style="color: black;">方法</span>就叫：<strong style="color: blue;">医务社工</strong>。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">说起医务社工，可能大<span style="color: black;">都数</span>人都<span style="color: black;">无</span>听说过，<span style="color: black;">非常多</span>人误以为<span style="color: black;">她们</span>是志愿者。其实<span style="color: black;">她们</span>是像<span style="color: black;">大夫</span>、护士<span style="color: black;">同样</span>，非常专业的人士。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">倘若</span>说<span style="color: black;">大夫</span>护士的任务是治疗肿瘤的话，医务社工的任务<span style="color: black;">便是</span>治疗心理。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">在发达国家，医务社工是<span style="color: black;">全部</span>医疗团队中，不可或缺的一部分，<span style="color: black;">然则</span>在中国却非常少见。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">不是<span style="color: black;">由于</span><span style="color: black;">咱们</span>缺<span style="color: black;">这般</span>的人才，事实上中国<span style="color: black;">非常多</span>大学都有社工专业，不仅有本科还有<span style="color: black;">科研</span>生，<span style="color: black;">然则</span>这些人面临最大的问题，是毕业以后找不到工作，<span style="color: black;">由于</span>医院里面<span style="color: black;">无</span>编制。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">因此</span>一方面，<span style="color: black;">咱们</span>面临这些家长、<span style="color: black;">孩儿</span><span style="color: black;">尤其</span><span style="color: black;">必须</span>心灵关怀的<span style="color: black;">状况</span>。但<span style="color: black;">另一</span>一方面，<span style="color: black;">咱们</span>明明有这么多具备专业知识的人，却<span style="color: black;">无</span>用武之地。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">这种困境<span style="color: black;">促进</span><span style="color: black;">咱们</span>思考：公益组织能<span style="color: black;">不可</span><span style="color: black;">供给</span><span style="color: black;">处理</span>办法？后来<span style="color: black;">咱们</span>就想，<strong style="color: blue;">公益组织能<span style="color: black;">不可</span>采购社工的服务，把它放到医院去？事实证明这是可行的。</strong></span></p><a style="color: black;"><span style="color: black;"><img src="data:image/svg+xml,%3C%3Fxml version=1.0 encoding=UTF-8%3F%3E%3Csvg width=1px height=1px viewBox=0 0 1 1 version=1.1 xmlns=http://www.w3.org/2000/svg xmlns:xlink=http://www.w3.org/1999/xlink%3E%3Ctitle%3E%3C/title%3E%3Cg stroke=none stroke-width=1 fill=none fill-rule=evenodd fill-opacity=0%3E%3Cg transform=translate(-249.000000, -126.000000) fill=%23FFFFFF%3E%3Crect x=249 y=126 width=1 height=1%3E%3C/rect%3E%3C/g%3E%3C/g%3E%3C/svg%3E" style="width: 50%; margin-bottom: 20px;"></span></a>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">点击<span style="color: black;">照片</span>查看医务社工</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">孟燃的故事</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">咱们</span>做的<span style="color: black;">第1</span>个尝试，就落在了昆明市儿童医院。<span style="color: black;">咱们</span>“采购”了一个社工，叫孟燃，一个非常优秀的<span style="color: black;">青年</span>姑娘。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">她<span style="color: black;">经过</span>病房<span style="color: black;">拜望</span>、个案<span style="color: black;">干涉</span>、医疗游戏、主题活动等<span style="color: black;">方法</span>，来<span style="color: black;">帮忙</span>这些<span style="color: black;">孩儿</span>，<span style="color: black;">乃至</span><span style="color: black;">帮忙</span>家长，安抚<span style="color: black;">她们</span>心理问题，<span style="color: black;">处理</span><span style="color: black;">她们</span>的<span style="color: black;">实质</span><span style="color: black;">必须</span>，让<span style="color: black;">她们</span>尽早地<span style="color: black;">恢复</span>。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">面临像小璞<span style="color: black;">这般</span>的<span style="color: black;">孩儿</span>时，医务社工有<span style="color: black;">非常多</span><span style="color: black;">非常多</span>专业技能<span style="color: black;">能够</span>派上用场，<span style="color: black;">包含</span>绘本阅读、正向激励，还有<span style="color: black;">有些</span>游戏，<span style="color: black;">例如</span>出征仪式等等，都能让他变得不<span style="color: black;">那样</span>恐惧，不<span style="color: black;">那样</span>自卑。</span></p><img src="data:image/svg+xml,%3C%3Fxml version=1.0 encoding=UTF-8%3F%3E%3Csvg width=1px height=1px viewBox=0 0 1 1 version=1.1 xmlns=http://www.w3.org/2000/svg xmlns:xlink=http://www.w3.org/1999/xlink%3E%3Ctitle%3E%3C/title%3E%3Cg stroke=none stroke-width=1 fill=none fill-rule=evenodd fill-opacity=0%3E%3Cg transform=translate(-249.000000, -126.000000) fill=%23FFFFFF%3E%3Crect x=249 y=126 width=1 height=1%3E%3C/rect%3E%3C/g%3E%3C/g%3E%3C/svg%3E" style="width: 50%; margin-bottom: 20px;">
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">医务社工<span style="color: black;">经过</span><span style="color: black;">非常多</span>专业技巧和<span style="color: black;">办法</span></span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">来实现对患儿和家长的人文关怀</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">后来，对小璞<span style="color: black;">干涉</span>了半年后，<span style="color: black;">出现</span>了一件事情，让孟燃<span style="color: black;">尤其</span>感动。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">有一天小璞在打游戏，他<span style="color: black;">忽然</span>邀请孟燃和他<span style="color: black;">一块</span>打游戏。孟燃说姐姐不会打游戏，但小璞说：“<span style="color: black;">不碍事</span>，我来<span style="color: black;">守护</span>你。”</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">当他说出这句话时，孟燃就<span style="color: black;">晓得</span>她的<span style="color: black;">干涉</span>成功了。<span style="color: black;">由于</span>当一个<span style="color: black;">孩儿</span>能说出“我能<span style="color: black;">守护</span>你”的时候，即使是打游戏的场景，<span style="color: black;">亦</span>能证明这个<span style="color: black;">孩儿</span><span style="color: black;">已然</span>走出了阴霾，恢复了勇敢和<span style="color: black;">自信心</span>。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">后来小璞确实恢复得非常好。他<span style="color: black;">恢复</span>后，不仅<span style="color: black;">作为</span>了<span style="color: black;">咱们</span>的志愿者，<span style="color: black;">况且</span>长高了、长壮了，笑容依旧。</span></p><img src="data:image/svg+xml,%3C%3Fxml version=1.0 encoding=UTF-8%3F%3E%3Csvg width=1px height=1px viewBox=0 0 1 1 version=1.1 xmlns=http://www.w3.org/2000/svg xmlns:xlink=http://www.w3.org/1999/xlink%3E%3Ctitle%3E%3C/title%3E%3Cg stroke=none stroke-width=1 fill=none fill-rule=evenodd fill-opacity=0%3E%3Cg transform=translate(-249.000000, -126.000000) fill=%23FFFFFF%3E%3Crect x=249 y=126 width=1 height=1%3E%3C/rect%3E%3C/g%3E%3C/g%3E%3C/svg%3E" style="width: 50%; margin-bottom: 20px;">
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">小璞<span style="color: black;">恢复</span>后</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">作为</span>了</span><span style="color: black;">『<span style="color: black;">向日葵儿</span><span style="color: black;">童</span>』</span><span style="color: black;">的志愿者</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">当看到<span style="color: black;">这般</span>的笑容，你会感觉，<span style="color: black;">针对</span>肿瘤患儿的治疗是成功的。<span style="color: black;">由于</span><span style="color: black;">咱们</span>治好的不仅是他的肿瘤，还有他受伤的心灵。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><strong style="color: blue;"><strong style="color: blue;">被社会拒之门外的</strong></strong></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><strong style="color: blue;"><strong style="color: blue;"><strong style="color: blue;">肿瘤患儿</strong></strong></strong></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">最后一个想分享的故事，主人公叫满满。他得的肿瘤叫<strong style="color: blue;">神经纤维瘤病</strong>，这是一种介于良性和恶性肿瘤之间的<span style="color: black;">疾患</span>。</span></p><strong style="color: blue;"><span style="color: black;">知识点</span></strong><span style="color: black;">神经纤维瘤病又<span style="color: black;">叫作</span>多发性神经纤维瘤，若瘤体单发则<span style="color: black;">叫作</span>为神经纤维瘤，<span style="color: black;">因为</span>基因突变<span style="color: black;">引起</span>的多系统损害的常染色体显性遗传病。</span><span style="color: black;">累及神经、肌肉、骨骼、 内脏、皮肤等全身各个系统，属于多系统<span style="color: black;">疾患</span>，但神经系统肿瘤为该病特征性表现，<span style="color: black;">重点</span></span><span style="color: black;">表现为皮肤咖啡斑伴皮下软组织肿块</span><span style="color: black;">。</span>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">拥有</span>家族遗传史的人更易患病，</span><span style="color: black;">以手术切除肿瘤和对症治疗为</span><span style="color: black;">主。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">（资料<span style="color: black;">源自</span>：百度健康医典）</span></span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><strong style="color: blue;"><span style="color: black;">它几乎<span style="color: black;">能够</span><span style="color: black;">出现</span>在全身各处，<span style="color: black;">生病</span>的人全身各个<span style="color: black;">地区</span>都可能长出肿瘤，<span style="color: black;">况且</span><span style="color: black;">特别有</span>可能会影响外貌。</span></strong><span style="color: black;"><span style="color: black;">因此呢</span>，虽然患儿可能寿命和正<span style="color: black;">一般人</span><span style="color: black;">同样</span>，<span style="color: black;">然则</span>却饱受社会的<span style="color: black;">卑视</span>。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">很不幸，满满就经受了<span style="color: black;">这般</span>的<span style="color: black;">卑视</span>。满满的眼眶里长了一个肿瘤，除了<span style="color: black;">引起</span>视觉受到影响，面部<span style="color: black;">亦</span><span style="color: black;">出现</span>了<span style="color: black;">有些</span>扭曲，<span style="color: black;">因此</span>满满从小就遭受<span style="color: black;">周边</span>人的<span style="color: black;">各样</span><span style="color: black;">卑视</span>、鄙夷，<span style="color: black;">各样</span>奇怪的眼光。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">满满非常幸福，有一个很爱他的妈妈。但<span style="color: black;">亦</span>很遗憾，<span style="color: black;">始终</span>都是妈妈一个人带着他。<span style="color: black;">患病</span>后，妈妈非常<span style="color: black;">奋斗</span>，想让满满得到一个正常<span style="color: black;">孩儿</span>应有的生活。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">但<span style="color: black;">火速</span>，满满妈妈<span style="color: black;">发掘</span>，想让他正常生活非常难，即使满满的智力非常正常，只是外观和<span style="color: black;">通常</span><span style="color: black;">孩儿</span>不<span style="color: black;">同样</span>。</span></p><img src="data:image/svg+xml,%3C%3Fxml version=1.0 encoding=UTF-8%3F%3E%3Csvg width=1px height=1px viewBox=0 0 1 1 version=1.1 xmlns=http://www.w3.org/2000/svg xmlns:xlink=http://www.w3.org/1999/xlink%3E%3Ctitle%3E%3C/title%3E%3Cg stroke=none stroke-width=1 fill=none fill-rule=evenodd fill-opacity=0%3E%3Cg transform=translate(-249.000000, -126.000000) fill=%23FFFFFF%3E%3Crect x=249 y=126 width=1 height=1%3E%3C/rect%3E%3C/g%3E%3C/g%3E%3C/svg%3E" style="width: 50%; margin-bottom: 20px;">
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">满满</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">满满三岁时，妈妈给他报了一个兴趣班，钱都交了，刚带满满到教室的门口，那边就说绝对<span style="color: black;">不可</span>进来，<span style="color: black;">由于</span><span style="color: black;">她们</span>以为满满会传染。四岁的时候给满满报幼儿园，<span style="color: black;">亦</span>被拒绝接收。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">这把满满的妈妈逼到什么程度？她辞去了自己非常好、非常稳定的工作，去考教师资格证。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">后来，她去一个幼儿园当老师，<span style="color: black;">独一</span>的<span style="color: black;">需求</span><span style="color: black;">便是</span>，幼儿园<span style="color: black;">必要</span>接收满满进幼儿园学习。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">我觉得这是一件非常荒谬的事情。这些<span style="color: black;">孩儿</span>，其实和别的<span style="color: black;">孩儿</span><span style="color: black;">无</span>什么两样。但<span style="color: black;">她们</span>除了要<span style="color: black;">奋斗</span>战胜病魔，更难的是还要战胜社会的<span style="color: black;">卑视</span>。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">因此</span>，<strong style="color: blue;">社会倡导<span style="color: black;">亦</span>是<span style="color: black;">咱们</span>基金会想和<span style="color: black;">大众</span><span style="color: black;">一块</span>来做的事，让<span style="color: black;">大众</span>正确地认知<span style="color: black;">疾患</span>，不要<span style="color: black;">卑视</span>患儿，<span style="color: black;">帮忙</span>这些<span style="color: black;">孩儿</span>重拾<span style="color: black;">自信心</span>。</strong></span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><strong style="color: blue;"><strong style="color: blue;"><span style="color: black;">开发</span>新药</strong></strong></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><strong style="color: blue;"><strong style="color: blue;"><strong style="color: blue;"><span style="color: black;">才可</span><span style="color: black;">基本</span><span style="color: black;">处理</span>问题</strong></strong></strong></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">从满满的故事中，我还想折射出<span style="color: black;">另一</span>一个<span style="color: black;">咱们</span>在做的事情——<strong style="color: blue;">科学<span style="color: black;">科研</span></strong>。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">日前</span>为止，满满得的肿瘤在中国还<span style="color: black;">无</span>特效药。<span style="color: black;">因此</span>她的肿瘤其实<span style="color: black;">始终</span>在生长，虽然绝大<span style="color: black;">都数</span>时，这种肿瘤不会致命，<span style="color: black;">然则</span>会影响她的外观，影响他的自<span style="color: black;">自信心</span>，<span style="color: black;">亦</span>有很小的可能会压迫到他非常<span style="color: black;">要紧</span>的器官，给他带来生命危险。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">因此</span>怎么办？我觉得<span style="color: black;">必须</span><span style="color: black;">研究</span>。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">然则</span>不管是神经纤维瘤，还是别的儿童癌症，其实都<strong style="color: blue;">非常缺乏新药</strong>。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">在过去的二三十年，<span style="color: black;">做为</span>癌症生物学家，我见证了<span style="color: black;">全部</span><span style="color: black;">行业</span>，为成人癌症<span style="color: black;">研发</span>了几乎200种不同的新药，彻底改变了<span style="color: black;">非常多</span>癌症<span style="color: black;">病人</span>的命运。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><strong style="color: blue;"><span style="color: black;"><span style="color: black;">然则</span>当面对儿童癌症时，<span style="color: black;">咱们</span>做的事情凤毛麟角。</span></strong></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">为何</span>？<strong style="color: blue;">究其<span style="color: black;">原由</span>是<span style="color: black;">由于</span><span style="color: black;">病人</span>太少</strong>。<span style="color: black;">病人</span>太少，一方面经济利益比较少。<span style="color: black;">另一</span>一方面欧美医院<span style="color: black;">尤其</span>分散，<span style="color: black;">每一个</span><span style="color: black;">大夫</span>可能一年就遇见两三个<span style="color: black;">病人</span>，<span style="color: black;">科研</span>非常难做。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">但中国有先天的<span style="color: black;">优良</span>，<span style="color: black;">由于</span><span style="color: black;">病人</span>群体非常庞大，有句话叫“任何的罕见病在中国都不罕见”。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">况且</span><span style="color: black;">由于</span>中国的好医院少，造<span style="color: black;">成为了</span><span style="color: black;">病人</span>其实非常集中，北京、上海一家大型三甲医院的<span style="color: black;">专家</span>，一年见过的罕见肿瘤数量，可能超过欧美全年。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">这是非常庞大的数据，<span style="color: black;">倘若</span>能好好利用，<span style="color: black;">必定</span>能做出<span style="color: black;">非常多</span><span style="color: black;">特别有</span><span style="color: black;">道理</span>的<span style="color: black;">研究</span>，为<span style="color: black;">病人</span><span style="color: black;">研发</span>出新药。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">因此</span>，<span style="color: black;">咱们</span><span style="color: black;">尤其</span>想学习类似盖茨基金会这种成熟的组织，去探索<strong style="color: blue;"><span style="color: black;">怎样</span>能<span style="color: black;">经过</span>公益形式，搭建平台，让临床专家、<span style="color: black;">研究</span>专家、政府<span style="color: black;">公司</span>、社会<span style="color: black;">公众</span>、药厂等各方面的人，都能参与</strong><strong style="color: blue;">，为得罕见病的<span style="color: black;">孩儿</span>，<span style="color: black;">研发</span>新的诊断<span style="color: black;">工具</span>、<span style="color: black;">研发</span>新药，<span style="color: black;">帮忙</span><span style="color: black;">她们</span>尽快恢复健康。</strong></span></p><a style="color: black;"><span style="color: black;"><img src="data:image/svg+xml,%3C%3Fxml version=1.0 encoding=UTF-8%3F%3E%3Csvg width=1px height=1px viewBox=0 0 1 1 version=1.1 xmlns=http://www.w3.org/2000/svg xmlns:xlink=http://www.w3.org/1999/xlink%3E%3Ctitle%3E%3C/title%3E%3Cg stroke=none stroke-width=1 fill=none fill-rule=evenodd fill-opacity=0%3E%3Cg transform=translate(-249.000000, -126.000000) fill=%23FFFFFF%3E%3Crect x=249 y=126 width=1 height=1%3E%3C/rect%3E%3C/g%3E%3C/g%3E%3C/svg%3E" style="width: 50%; margin-bottom: 20px;"></span></a><span style="color: black;">点击<span style="color: black;">照片</span>查看<span style="color: black;">更加多</span></span>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">其实有一个好<span style="color: black;">信息</span>，经过<span style="color: black;">非常多</span>年的<span style="color: black;">奋斗</span>，像满满这样的<span style="color: black;">孩儿</span>，有药可治了。这个<span style="color: black;">药品</span><span style="color: black;">已然</span>在美国上市了，我相信<span style="color: black;">火速</span>会来到中国，它让这种肿瘤患儿的<span style="color: black;">存活</span>质量得到了<span style="color: black;">明显</span><span style="color: black;">加强</span>。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">当然我更<span style="color: black;">期盼</span>的是，<span style="color: black;">将来</span>在中国，<span style="color: black;">咱们</span>能利用丰富的临床资源，利用非常强的<span style="color: black;">研究</span>能力，<span style="color: black;">研发</span>出<span style="color: black;">更加多</span>能惠及<span style="color: black;">全世界</span>的儿童肿瘤新药。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">因此</span>这些，<span style="color: black;">便是</span><span style="color: black;">『向日葵儿童』</span>在做的事情，<span style="color: black;">咱们</span>的口号叫“专业点燃<span style="color: black;">期盼</span>”。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">咱们</span>相信做好的公益、<span style="color: black;">有效</span>的公益，不仅<span style="color: black;">必须</span><span style="color: black;">热情</span>，还<span style="color: black;">必须</span>时间、热情，更<span style="color: black;">要紧</span>的是<span style="color: black;">必须</span>专业能力、资源和知识。</span></p><a style="color: black;"><span style="color: black;"><img src="data:image/svg+xml,%3C%3Fxml version=1.0 encoding=UTF-8%3F%3E%3Csvg width=1px height=1px viewBox=0 0 1 1 version=1.1 xmlns=http://www.w3.org/2000/svg xmlns:xlink=http://www.w3.org/1999/xlink%3E%3Ctitle%3E%3C/title%3E%3Cg stroke=none stroke-width=1 fill=none fill-rule=evenodd fill-opacity=0%3E%3Cg transform=translate(-249.000000, -126.000000) fill=%23FFFFFF%3E%3Crect x=249 y=126 width=1 height=1%3E%3C/rect%3E%3C/g%3E%3C/g%3E%3C/svg%3E" style="width: 50%; margin-bottom: 20px;"></span></a>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">为抗癌小勇士拍摄写真</span></span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;"><span style="color: black;">点击<span style="color: black;">照片</span>查看<span style="color: black;">更加多</span></span></span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">我相信<span style="color: black;">倘若</span>在座的人，<span style="color: black;">倘若</span><span style="color: black;">一块</span>为这些<span style="color: black;">孩儿</span>奋斗，总有一天能实现<span style="color: black;">咱们</span>基金会的愿景，那<span style="color: black;">便是</span>——<strong style="color: blue;">每一个<span style="color: black;">孩儿</span>都值得<span style="color: black;">持有</span>健康光明的<span style="color: black;">将来</span></strong>。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">谢谢<span style="color: black;">大众</span>！</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">*<span style="color: black;">尤其</span>声明：文中所有<span style="color: black;">名人</span>照片均已<span style="color: black;">得到</span>授权。</span></p><strong style="color: blue;"><span style="color: black;">科普中国-</span><span style="color: black;">我是<span style="color: black;">专家</span>，</span><span style="color: black;">我来做科普</span></strong>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><span style="color: black;">“科普中国-我是<span style="color: black;">专家</span>”是“科普中国”旗下子品牌，由中国科协科普部主办，果壳承办。本项目<span style="color: black;">经过</span>为<span style="color: black;">专家</span>搭建演讲平台，并<span style="color: black;">经过</span>新<span style="color: black;">媒介</span>阵地广泛传播，向公众弘扬科学精神、普及科学知识，在<span style="color: black;">专家</span>群体中形成做科普、会科普的示范效应。</span></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><img src="data:image/svg+xml,%3C%3Fxml version=1.0 encoding=UTF-8%3F%3E%3Csvg width=1px height=1px viewBox=0 0 1 1 version=1.1 xmlns=http://www.w3.org/2000/svg xmlns:xlink=http://www.w3.org/1999/xlink%3E%3Ctitle%3E%3C/title%3E%3Cg stroke=none stroke-width=1 fill=none fill-rule=evenodd fill-opacity=0%3E%3Cg transform=translate(-249.000000, -126.000000) fill=%23FFFFFF%3E%3Crect x=249 y=126 width=1 height=1%3E%3C/rect%3E%3C/g%3E%3C/g%3E%3C/svg%3E" style="width: 50%; margin-bottom: 20px;"></p>
<p style="font-size: 16px; color: black; line-height: 40px; text-align: left; margin-bottom: 15px;"><a style="color: black;"><span style="color: black;"><img src="data:image/svg+xml,%3C%3Fxml version=1.0 encoding=UTF-8%3F%3E%3Csvg width=1px height=1px viewBox=0 0 1 1 version=1.1 xmlns=http://www.w3.org/2000/svg xmlns:xlink=http://www.w3.org/1999/xlink%3E%3Ctitle%3E%3C/title%3E%3Cg stroke=none stroke-width=1 fill=none fill-rule=evenodd fill-opacity=0%3E%3Cg transform=translate(-249.000000, -126.000000) fill=%23FFFFFF%3E%3Crect x=249 y=126 width=1 height=1%3E%3C/rect%3E%3C/g%3E%3C/g%3E%3C/svg%3E" style="width: 50%; margin-bottom: 20px;"></span></a></p>
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