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15岁男孩患怪病酷似"吸血鬼" 长"獠牙"怕见光(图)
2016-02-17 09:26:32 中国新闻网
“我父母是亲戚,大家都怀疑这病是不是近亲结婚造成的。”马玉旭说,在父母的上一辈,家中从没有这样的怪病出现。2009年,马玉旭再婚,2013年7月,生下了第二个男孩,病情同哥哥兰海一样。只是,孩子半岁发高烧时未能挺过来,夭折。在这之后,马玉旭再婚的丈夫因扛不住外界关于怪病的传言消失了。
马玉旭说,自己是个没文化的人,也没有什么手艺。为了支撑起这个家,为儿子兰海查出病因,她现在只能在观音桥摆夜摊,专门挑小面。
发病率十万分之一 改变面部形象或重拾自信
“这类病并未有明确病因,但现在基本能确认这是一种遗传性疾病。”西南医院口腔科副教授汪昆说,该病的发病率约十万分之一,是一种较为罕见和严重的疾病,患儿表皮萎缩变薄、真皮减薄,汗管和汗腺大都缺失,毛囊和皮脂腺也减少。
“一般患者,很难活过5岁,兰海能挺过幼儿阶段已经很幸运了。特别是一个家族有好几个人都是这样的情况,更是少之又少。”汪昆说,该病目前无法根治,但对于兰海来说,已没有生命危险,但是由于牙齿的问题,兰海很多食物不能吃,导致营养不良。
汪昆说,面部的缺陷和别人的眼光让他自己很难接受,如要让他好好生活下去,现在能做的只有改善他的面部形象,提高他的自信心。
目前,兰海开始准备镶牙,但由于牙槽骨非常薄,不足正常人的1/3,无法为传统的假牙提供固位力和支撑,最好的方法就是种植牙。汪昆说,此前曾有一个贵州的男孩,与兰海患有相同的疾病,当时在重庆众多爱心人士的帮助下,加上医院给予的费用减免,孩子成功改变了外形,目前已经从技校毕业,在贵阳一家公司上班,过上正常人的生活。
责任编辑:孙启浩 cn037
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