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专家:防止“玻璃人”致残 预防性治疗是关键

2019-04-17 屈婷 鲍晓菁 新华社

2019年4月17日是第31个世界血友病日,今年的主题是“伸出援手——关心的第一步”。记者采访了解到,绝大多数血友病患者诊断时间偏晚,导致致残风险高。专家表示,预防性治疗可以有效防止出血、减少患者致残。上海交通大学医学院附属新华医院小儿血液肿瘤科副主任医师何珂骏在接受记者采访时介绍,血友病是一种遗传性凝血功能障碍导致的出血性疾病,70%有家族史,30%来自基因突变,因此儿童时期的早发现和早治疗十分

2019年4月17日是第31个世界血友病日,今年的主题是“伸出援手——关心的第一步”。记者采访了解到,绝大多数血友病患者诊断时间偏晚,导致致残风险高。专家表示,预防性治疗可以有效防止出血、减少患者致残。

上海交通大学医学院附属新华医院小儿血液肿瘤科副主任医师何珂骏在接受记者采访时介绍,血友病是一种遗传性凝血功能障碍导致的出血性疾病,70%有家族史,30%来自基因突变,因此儿童时期的早发现和早治疗十分关键。

安徽省血友病管理中心主任郑昌成介绍,在安徽,血友病人有3500人左右,但仅有700多人接受治疗。许多患者忽视了早期症状,频繁、自发性出血造成了关节畸形、或不可逆伤残,导致患者致残率高,生活质量低。

由于血液中天然缺少凝血因子,拔牙、摔倒、划伤这些小事也会给血友病人带来大麻烦,甚至危及生命,因此他们又被称为“玻璃人”。但专家说,血友病人虽然终生不可痊愈,但完全可以通过规范化的预防性治疗,重获高质量人生,也可以结婚、生子。

据郑昌成介绍,以往受限于医疗条件,血友病治疗多采取按需治疗和低剂量治疗,不能有效防止患者的关节病变。而预防性治疗是“防患于未然”,在未出血时就进行干预,但需要医疗保障的投入和基层医疗机构诊疗能力的提高。

何珂骏呼吁,要让更多患者、更多医生了解到预防治疗的重要性,如果做好预防,血友病的门诊治疗可以转化为家庭治疗和社区综合护理,从长远看将有利于患者生理和心理上摆脱疾病的枷锁,走出“玻璃人”的困境。

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