国际罕见病日丨罕见病并不遥远，与每一个人息息相关
<p style="text-align: center;" data-mpa-powered-by="yiban.io"></p><p style="text-align: center;"><br/></p><p><section data-role="outer" label="Powered by 135editor.com"><section data-role="paragraph"><p style="text-align:center;"><span style="color: rgb(63, 63, 63);font-size: 15px;font-family: PingFangSC-Regular;">2021年2月28日</span></p><p style="text-align:center;"><span style="color: rgb(63, 63, 63);font-size: 15px;font-family: PingFangSC-Regular;">是第14个国际罕见病日</span></p><p style="text-align:center;"><span style="color: rgb(63, 63, 63);font-size: 15px;font-family: PingFangSC-Regular;">今年主题为</span></p><p style="text-align:center;"><span style="color: rgb(63, 63, 63);font-size: 15px;font-family: PingFangSC-Regular;">“Rare is many. Rare is strong. Rare is proud.”</span></p><p style="text-align:center;"><span style="color: rgb(63, 63, 63);font-size: 15px;font-family: PingFangSC-Regular;">病痛挑战基金会将其译为<span style="color: rgb(192, 0, 0);"><strong>“罕见的骄傲”</strong></span></span></p><p style="text-align:justify;"><br/></p><p style="text-align:justify;"><span style="color: rgb(63, 63, 63);font-size: 15px;font-family: PingFangSC-Regular;"></span></p><section data-tools="135编辑器" data-id="102284"><section style="margin-top: 10px;margin-bottom: 10px;text-align: center;"><section style="display: inline-flex;flex-direction: column;justify-content: center;"><section style="display: flex;justify-content: center;align-items: center;margin-right: 5px;"><section style="width: 30px;margin-right: -10px;transform: rotate(0deg);"><img data-ratio="0.8709677419354839" src="http://www.yongchuantong.com/plugin.php?id=wcn_editor:wx_img&url=https://mmbiz.qpic.cn/mmbiz_png/FIBZec7ucCjbMyrVVbbSuuzmpLicF1a2byvElia86kicbN9t734svA2WaJvV3wAAyvul7lBJYhUKNJicXUZ6Z6FtpA/640?wx_fmt=png" data-type="png" data-w="31" data-width="100%" style="box-sizing:border-box;width: 100%;display: block;"/></section><section data-brushtype="text" style="font-size: 16px;color: rgb(52, 110, 183);font-weight: bold;letter-spacing: 1.5px;line-height: 2.5em;padding-right: 1em;padding-left: 1.4em;background: rgb(234, 240, 248);" hm_fix="298:283"><span style="font-family: PingFangSC-Regular;">什么是国际罕见病日？</span></section></section><section style="width: 100%;height: 1px;background: rgb(52, 110, 183);margin-top: -4px;overflow: hidden;" data-width="100%"><br/></section></section></section></section><section style="text-align: justify;line-height: normal;"><br/></section><p style="text-align:justify;"><span style="font-family: PingFangSC-Regular;"><span style="caret-color: red;color: rgb(63, 63, 63);font-size: 15px;">国际罕见病日（Rare Disease Day）由欧洲罕见病组织于2008年发起，自2009年以来，为了更好的推动罕见病知识的普及，将每年2月的最后一天都作为国际罕见病日的纪念日。</span></span></p><p style="text-align: center;"><br/></p><section style="margin-top: 10px;margin-bottom: 8px;font-size: 16px;letter-spacing: 0.544px;background-color: rgb(255, 255, 255);font-family: -apple-system, BlinkMacSystemFont, Arial, sans-serif;"><section style="padding-left: 8px;display: inline-block;width: 100%;vertical-align: top;border-left: 3px solid rgb(13, 112, 174);border-bottom-left-radius: 0px;"><section style="color: rgb(13, 112, 174);"><p><span style="font-family: PingFangSC-Regular;font-size: 17px;"><strong>罕见病，比你想象得要多很多</strong></span></p></section></section></section><section style="font-size: 16px;letter-spacing: 0.544px;background-color: rgb(255, 255, 255);line-height: 0.2;font-family: -apple-system, BlinkMacSystemFont, Arial, sans-serif;"><p><br/></p></section><section style="background-color: rgb(255, 255, 255);font-size: 15px;color: rgb(92, 89, 89);line-height: 1.8;letter-spacing: 1px;font-family: -apple-system, BlinkMacSystemFont, Arial, sans-serif;"><p><span style="caret-color: red;color: rgb(63, 63, 63);font-family: PingFangSC-Regular;">据EURODIS及美国国立卫生研究所估测，目前国际社会已甄别出的罕见病约有5000-7000 种 ，罕见病的患者总量十分庞大。欧盟将罕见病定义为患病率小于 5/10000，导致人体衰弱或危及生命的疾病；美国将患病人数小于200,000 人，即患病率小于1/1500人的疾病则被定义为罕见病。</span></p></section><section style="font-size: 16px;letter-spacing: 0.544px;background-color: rgb(255, 255, 255);line-height: 1;font-family: -apple-system, BlinkMacSystemFont, Arial, sans-serif;"><p><br/></p></section><section style="margin-top: 10px;margin-bottom: 8px;font-size: 16px;letter-spacing: 0.544px;background-color: rgb(255, 255, 255);font-family: -apple-system, BlinkMacSystemFont, Arial, sans-serif;"><section style="padding-left: 8px;display: inline-block;width: 100%;vertical-align: top;border-left: 3px solid rgb(13, 112, 174);border-bottom-left-radius: 0px;"><section style="color: rgb(13, 112, 174);"><p><span style="font-family: PingFangSC-Regular;font-size: 17px;"><strong>你一定听说过的几类罕见病</strong></span></p></section></section></section><section style="margin-top: 15px;font-size: 16px;letter-spacing: 0.544px;background-color: rgb(255, 255, 255);font-family: -apple-system, BlinkMacSystemFont, Arial, sans-serif;"><section style="font-size: 15px;color: rgb(92, 89, 89);line-height: 1.8;letter-spacing: 1px;"><section data-role="outer" label="Powered by 135editor.com"><section data-role="paragraph"><section style="margin-top: 15px;margin-bottom: 15px;font-size: 16px;letter-spacing: 0.544px;background-color: rgb(255, 255, 255);text-align: left;justify-content: flex-start;font-family: -apple-system, BlinkMacSystemFont, Arial, sans-serif;"><section style="display: inline-block;background-position: 0% 0%;background-repeat: repeat;background-size: auto;background-attachment: scroll;border-style: none;border-width: 1px;border-radius: 0px;border-color: #3e3e3e;background-image: url(http://www.yongchuantong.com/plugin.php?id=wcn_editor:wx_img&url=https://mmbiz.qpic.cn/mmbiz_png/KHZkrFO61G5ExEbolY01J9Xn3uegzCxp8AguzZqQ7IE2NKaiclJ17lH7LrcSxRE5toktzVkJpERbrSw9MJXVLYA/640?wx_fmt=png);box-sizing: border-box;"><section style="margin-top: 5px;margin-bottom: -5px;text-align: right;transform: translate3d(5px, 0px, 0px);-webkit-transform: translate3d(5px, 0px, 0px);-moz-transform: translate3d(5px, 0px, 0px);-ms-transform: translate3d(5px, 0px, 0px);-o-transform: translate3d(5px, 0px, 0px);"><section style="padding: 5px;display: inline-block;border-style: none;border-width: 1px;border-radius: 0px;border-color: #3e3e3e;box-sizing: border-box;"><section style="padding-right: 5px;padding-left: 5px;text-align: justify;box-sizing: border-box;"><p><span style="font-family: PingFangSC-Regular;"><strong>渐冻症</strong></span></p></section></section></section></section></section><section style="background-color: rgb(255, 255, 255);font-size: 15px;color: rgb(92, 89, 89);line-height: 1.8;letter-spacing: 1px;font-family: -apple-system, BlinkMacSystemFont, Arial, sans-serif;"><p><span style="font-family: PingFangSC-Regular;">在2020年新冠肺炎肆虐时，我们在第一时间知道了金银潭医院院长张定宇，却不知道他也是一名“渐冻人”。</span></p></section><section style="margin-top: 10px;margin-bottom: 15px;font-size: 16px;letter-spacing: 0.544px;background-color: rgb(255, 255, 255);text-align: center;font-family: -apple-system, BlinkMacSystemFont, Arial, sans-serif;"><section style="vertical-align: middle;display: inline-block;line-height: 0;"></section></section><section style="letter-spacing: 0.544px;background-color: rgb(255, 255, 255);font-size: 12px;color: rgb(160, 160, 160);text-align: center;font-family: -apple-system, BlinkMacSystemFont, Arial, sans-serif;"><p><span style="font-family: PingFangSC-Regular;font-size: 14px;">▲金银潭医院院长坚守抗疫一线</span></p><p><br/></p></section><section style="background-color: rgb(255, 255, 255);font-size: 15px;color: rgb(92, 89, 89);line-height: 1.8;letter-spacing: 1px;font-family: -apple-system, BlinkMacSystemFont, Arial, sans-serif;"><p style="text-align:justify;"><span style="font-family: PingFangSC-Regular;"><strong>渐冻症，即肌萎缩侧索硬化（ALS）</strong>，也叫运动神经元病（MND）。早期症状轻微，只是感到有些无力、肉跳、容易疲劳等，接着渐渐出现全身肌肉萎缩、失去行走能力直至瘫痪以及吞咽困难现象，最后产生呼吸衰竭。</span></p><section style="text-align: justify;line-height: normal;"><br/></section></section><section style="margin-top: 10px;margin-bottom: 15px;font-size: 16px;letter-spacing: 0.544px;background-color: rgb(255, 255, 255);text-align: left;justify-content: flex-start;font-family: -apple-system, BlinkMacSystemFont, Arial, sans-serif;"><section style="display: inline-block;background-position: 0% 0%;background-repeat: repeat;background-size: auto;background-attachment: scroll;border-style: none;border-width: 1px;border-radius: 0px;border-color: #3e3e3e;background-image: url(http://www.yongchuantong.com/plugin.php?id=wcn_editor:wx_img&url=https://mmbiz.qpic.cn/mmbiz_png/KHZkrFO61G5ExEbolY01J9Xn3uegzCxp8AguzZqQ7IE2NKaiclJ17lH7LrcSxRE5toktzVkJpERbrSw9MJXVLYA/640?wx_fmt=png);box-sizing: border-box;"><section style="margin-top: 5px;margin-bottom: -5px;text-align: right;transform: translate3d(5px, 0px, 0px);-webkit-transform: translate3d(5px, 0px, 0px);-moz-transform: translate3d(5px, 0px, 0px);-ms-transform: translate3d(5px, 0px, 0px);-o-transform: translate3d(5px, 0px, 0px);"><section style="padding: 5px;display: inline-block;border-style: none;border-width: 1px;border-radius: 0px;border-color: #3e3e3e;box-sizing: border-box;"><section style="padding-right: 5px;padding-left: 5px;text-align: justify;box-sizing: border-box;"><p><span style="font-family: PingFangSC-Regular;"><strong>白化病</strong></span></p></section></section></section></section></section><section style="background-color: rgb(255, 255, 255);font-size: 15px;color: rgb(92, 89, 89);line-height: 1.8;letter-spacing: 1px;font-family: -apple-system, BlinkMacSystemFont, Arial, sans-serif;"><p><span style="font-family: PingFangSC-Regular;">白化病是由于<strong>不同基因的突变</strong>，导致黑色素或黑色素体生物合成缺陷，从而表现为皮肤、眼睛、毛发等色素缺乏的一种遗传病症。<span style="caret-color: red;">白化病患者的皮肤和毛发呈白化现象，易晒伤、大多有眼球震颤、怕光、低视力等现象，目前无有效的治疗方法。</span></span></p><section style="line-height: normal;"><br/></section></section><section style="margin-top: 10px;margin-bottom: 15px;font-size: 16px;letter-spacing: 0.544px;background-color: rgb(255, 255, 255);text-align: left;justify-content: flex-start;font-family: -apple-system, BlinkMacSystemFont, Arial, sans-serif;"><section style="display: inline-block;background-position: 0% 0%;background-repeat: repeat;background-size: auto;background-attachment: scroll;border-style: none;border-width: 1px;border-radius: 0px;border-color: #3e3e3e;background-image: url(http://www.yongchuantong.com/plugin.php?id=wcn_editor:wx_img&url=https://mmbiz.qpic.cn/mmbiz_png/KHZkrFO61G5ExEbolY01J9Xn3uegzCxp8AguzZqQ7IE2NKaiclJ17lH7LrcSxRE5toktzVkJpERbrSw9MJXVLYA/640?wx_fmt=png);box-sizing: border-box;"><section style="margin-top: 5px;margin-bottom: -5px;text-align: right;transform: translate3d(5px, 0px, 0px);-webkit-transform: translate3d(5px, 0px, 0px);-moz-transform: translate3d(5px, 0px, 0px);-ms-transform: translate3d(5px, 0px, 0px);-o-transform: translate3d(5px, 0px, 0px);"><section style="padding: 5px;display: inline-block;border-style: none;border-width: 1px;border-radius: 0px;border-color: #3e3e3e;box-sizing: border-box;"><section style="padding-right: 5px;padding-left: 5px;text-align: justify;box-sizing: border-box;"><p><span style="font-family: PingFangSC-Regular;"><strong>苯酮尿症</strong></span></p></section></section></section></section></section><section style="background-color: rgb(255, 255, 255);font-size: 15px;color: rgb(92, 89, 89);line-height: 1.8;letter-spacing: 1px;font-family: -apple-system, BlinkMacSystemFont, Arial, sans-serif;"><p style="text-align:justify;"><span style="font-family: PingFangSC-Regular;">苯酮尿症缺乏丙酮酸羟化酶，苯丙氨酸只能靠转氨生成苯丙酮酸，患者尿中排出大量苯丙酮酸。苯丙酮酸堆积对神经有毒害，使智力发育出现障碍。新生儿患病的机率约是5万分之一，一年约有6～7个患有此种病症的新生儿出生。</span></p><section style="text-align: justify;line-height: normal;"><br/></section></section><section style="margin-top: 10px;margin-bottom: 15px;font-size: 16px;letter-spacing: 0.544px;background-color: rgb(255, 255, 255);text-align: left;justify-content: flex-start;font-family: -apple-system, BlinkMacSystemFont, Arial, sans-serif;"><section style="display: inline-block;background-position: 0% 0%;background-repeat: repeat;background-size: auto;background-attachment: scroll;border-style: none;border-width: 1px;border-radius: 0px;border-color: #3e3e3e;background-image: url(http://www.yongchuantong.com/plugin.php?id=wcn_editor:wx_img&url=https://mmbiz.qpic.cn/mmbiz_png/KHZkrFO61G5ExEbolY01J9Xn3uegzCxp8AguzZqQ7IE2NKaiclJ17lH7LrcSxRE5toktzVkJpERbrSw9MJXVLYA/640?wx_fmt=png);box-sizing: border-box;"><section style="margin-top: 5px;margin-bottom: -5px;text-align: right;transform: translate3d(5px, 0px, 0px);-webkit-transform: translate3d(5px, 0px, 0px);-moz-transform: translate3d(5px, 0px, 0px);-ms-transform: translate3d(5px, 0px, 0px);-o-transform: translate3d(5px, 0px, 0px);"><section style="padding: 5px;display: inline-block;border-style: none;border-width: 1px;border-radius: 0px;border-color: #3e3e3e;box-sizing: border-box;"><section style="padding-right: 5px;padding-left: 5px;text-align: justify;box-sizing: border-box;"><p><span style="font-family: PingFangSC-Regular;"><strong>肢端肥大症</strong></span></p></section></section></section></section></section><section style="margin-bottom: 15px;font-size: 16px;letter-spacing: 0.544px;background-color: rgb(255, 255, 255);font-family: -apple-system, BlinkMacSystemFont, Arial, sans-serif;"><section style="font-size: 15px;color: #5c5959;line-height: 1.8;letter-spacing: 1px;"><p style="text-align:justify;"><span style="font-family: PingFangSC-Regular;">肢端肥大症是<strong>脑下垂体因增生或肿瘤而引起生长激素分泌过多</strong>引起的皮肤及骨骼异常增生性疾病。未成年人发病引起巨人症，成年人发病表现为皮肤弥漫性肥大增厚，面部皮肤纹理增粗，皱纹加深，鼻唇沟增宽，舌、嘴唇变厚。同时垂体肿瘤压迫导致器官病变且恶性肿瘤发生率也会相应增加，寿命缩短。发病率6～18人/百万。</span></p></section></section></section></section><section style="margin-top: 10px;margin-bottom: 8px;max-width: 100%;box-sizing: border-box;font-size: 16px;letter-spacing: 0.544px;background-color: rgb(255, 255, 255);font-family: -apple-system, BlinkMacSystemFont, Helvetica Neue, PingFang SC, Hiragino Sans GB, Microsoft YaHei UI, Microsoft YaHei, Arial, sans-serif;overflow-wrap: break-word !important;"><section style="box-sizing: border-box;padding-left: 8px;max-width: 100%;display: inline-block;width: 100%;vertical-align: top;border-left: 3px solid rgb(13, 112, 174);border-bottom-left-radius: 0px;overflow-wrap: break-word !important;"><section style="max-width: 100%;box-sizing: border-box;color: rgb(13, 112, 174);font-size: 17px;overflow-wrap: break-word !important;"><p style="max-width: 100%;box-sizing: border-box;min-height: 1em;overflow-wrap: break-word !important;"><span style="font-family: PingFangSC-Regular;"><strong style="max-width: 100%;box-sizing: border-box;overflow-wrap: break-word !important;">孤儿药，罕见病患者的希望</strong></span></p></section></section><br/></section><section style="margin-top: 15px;max-width: 100%;box-sizing: border-box;font-size: 16px;letter-spacing: 0.544px;background-color: rgb(255, 255, 255);font-family: -apple-system, BlinkMacSystemFont, Helvetica Neue, PingFang SC, Hiragino Sans GB, Microsoft YaHei UI, Microsoft YaHei, Arial, sans-serif;overflow-wrap: break-word !important;"><section style="max-width: 100%;box-sizing: border-box;font-size: 15px;color: rgb(92, 89, 89);line-height: 1.8;letter-spacing: 1px;overflow-wrap: break-word !important;"><p style="max-width: 100%;box-sizing: border-box;min-height: 1em;overflow-wrap: break-word !important;"><span style="font-family: PingFangSC-Regular;"><strong style="max-width: 100%;box-sizing: border-box;overflow-wrap: break-word !important;">95%的罕见病仍没有特效药。</strong>由于疾病比较罕见、对病因不明确，可能要经过5至10个的医生才能确诊，经常性的误诊、漏诊，以致治疗时间过长，不仅给家庭带来经济负担，有时还可能会延误治疗危及生命。目前，罕见病问题还没有完全得到社会和政府的广泛关注，<strong style="max-width: 100%;box-sizing: border-box;overflow-wrap: break-word !important;">罕见病患者面临缺医少药、无药可医的基本医疗问题，患者家庭因病致贫现象普遍。</strong><br style="max-width: 100%;box-sizing: border-box;overflow-wrap: break-word !important;"/></span></p><p style="max-width: 100%;box-sizing: border-box;min-height: 1em;overflow-wrap: break-word !important;"><br/></p><p style="max-width: 100%;box-sizing: border-box;min-height: 1em;overflow-wrap: break-word !important;"><span style="font-family: PingFangSC-Regular;">因此，相比普通疾病的病人，得了罕见病的病人可能会面临长期甚至是一辈子无药可用的状态。很多病人只能在忍受疾病带来的苦痛的同时，寄希望于未来会出现针对这种“罕见病”的特效药，很多人直到生命最后一刻都没有等到。</span></p></section></section><section style="margin-top: 10px;margin-bottom: 8px;color: rgb(51, 51, 51);font-size: 16px;letter-spacing: 0.544px;"><section style="padding-left: 8px;display: inline-block;width: 100%;vertical-align: top;border-left: 3px solid rgb(13, 112, 174);border-bottom-left-radius: 0px;"><section style="color: rgb(13, 112, 174);font-size: 17px;"><p><span style="font-family: PingFangSC-Regular;"><strong>产前筛查、产前诊断是预防重点！</strong></span></p></section></section></section><p style="line-height: normal;"><span style="font-family: PingFangSC-Regular;"></span></p><section data-role="list"><p><span style="font-family: PingFangSC-Regular;">在目前已知的7000种罕见病，80%属于基因缺陷疾病，与遗传有关。</span><span style="font-family: PingFangSC-Regular;color: rgb(171, 25, 66);"><strong>所以做好婚检、孕检和新生儿筛查很重要。</strong></span><span style="font-family: PingFangSC-Regular;">罕见病产前的“三级预防”：</span></p><p><br/></p><p><strong><span style="font-family: PingFangSC-Regular;">第一级预防：</span></strong><span style="font-family: PingFangSC-Regular;">在孕前进行优生四项、染色体检查等，最好是夫妻双方都查，看是否携带致病基因。</span></p><p><br/></p><p><strong><span style="font-family: PingFangSC-Regular;">第二级预防：</span></strong><span style="font-family: PingFangSC-Regular;">怀孕期间检查，从怀孕两个月到六个月期间，都可以检测血友病、肌营养不良、白化病等罕见病。</span></p><p><br/></p><p><strong><span style="font-family: PingFangSC-Regular;">第三级预防：</span></strong><span style="font-family: PingFangSC-Regular;">新生儿筛查，出生后抽第一滴血，就能查苯丙酮尿症等罕见病，一旦查出罕见病，可及时治疗、干预，越早效果越好。</span></p></section></section></section><section><p><br/></p><p style="text-align:center;line-height: 2em;"><span style="font-size: 16px;font-family: PingFangSC-Regular;"><strong><span style="color: rgb(13, 112, 174);">永川区中医院与您一起</span></strong></span></p><p style="text-align:center;line-height: 2em;"><span style="font-size: 16px;font-family: PingFangSC-Regular;"><strong><span style="color: rgb(13, 112, 174);">关爱罕见病患者，关注罕见病</span></strong></span></p><p style="text-align:center;line-height: 2em;"><span style="font-size: 16px;font-family: PingFangSC-Regular;"><strong><span style="color: rgb(13, 112, 174);">为罕见病患者尽一份最大的努力</span></strong></span></p><p style="text-align:center;"><br/></p><section style="margin-top: 30px;font-size: 16px;letter-spacing: 0.544px;background-color: rgb(255, 255, 255);font-family: -apple-system, BlinkMacSystemFont, Arial, sans-serif;"><section style="padding: 10px;display: inline-block;width: 100%;vertical-align: top;border-style: solid;border-width: 1px;border-radius: 0px;border-color: rgb(24, 54, 118);"><section style="margin-top: -30px;"><section style="color: rgb(13, 112, 174);"><p><span style="font-family: PingFangSC-Regular;"><strong><em> 你的罕见，我们看见 </em></strong></span></p></section></section><section style="line-height: 1;"><p><br/></p></section><section style="font-size: 15px;color: rgb(92, 89, 89);line-height: 1.8;letter-spacing: 1px;"><p><span style="font-family: PingFangSC-Regular;">每一个罕见病患者都不是可有可无的存在，目前国内对于罕见病的治疗制度还不是很完善，其药物也很昂贵，我们所做的一切，希望能让更多的罕见病患者受到大家的关注，获得可持续的医疗保障。</span><span style="font-family: PingFangSC-Regular;">医药行业的从业者更应携手合作去填补那些无药可治的空白，为罕见病患者带去真正的希望。</span><br/></p></section></section></section><p><br/></p><section data-tools="135编辑器" data-id="102192"><section style="margin-top: 10px;margin-bottom: 10px;"><section style="display: flex;justify-content: center;align-items: center;flex-direction: column;"><section style="width: 14px;height: 14px;background-color: rgb(190, 220, 255);border-top: 1px solid rgb(190, 220, 255);margin-right: 15px;margin-bottom: -8px;margin-left: 4px;"><section style="width: 10px;height: 10px;background-color: rgb(255, 182, 198);margin-top: 6px;margin-left: -4px;overflow: hidden;"><br/></section></section><section data-brushtype="text" style="font-size: 16px;letter-spacing: 1.5px;color: #3b60a0;margin-top: 15PX;margin-left: -10PX;">END</section></section></section></section></section><p style="text-align:center;"><br/></p></section></section></p><p><br/></p><link rel="stylesheet" href="http://www.yongchuantong.com/source/plugin/wcn_editor/public/wcn_editor_fit.css?v133_xjy" id="wcn_editor_css"/> 我也有慢性病这么多没有听过的病症，感觉活着真不容易
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