EP47 一碰就出血的“玻璃人”!是什么让他们改写人生?!血友病还会关节变形?危及生命? episode artwork

EPISODE · Apr 17, 2026 · 22 MIN

EP47 一碰就出血的“玻璃人”!是什么让他们改写人生?!血友病还会关节变形?危及生命?

from 没问题诊所

你听说过“玻璃人”吗?他们是重型血友病患者。由于缺乏凝血因子,即使是轻微的活动也可能让他们反复出血。出血常常发生在膝盖、脚踝,或大腿、臀部等肌肉位置。反复的关节出血,会让关节肿胀、疼痛,长此以往导致活动受限、关节变形甚至残疾;肌肉内出血形成血肿,可能压迫神经或血管,导致疼痛、麻木或肢体活动障碍;还有可能发生内脏出血,比如吐血、便血、血尿;更可怕的是最危险的并发症——颅内出血,随时可能危及生命。疼痛、恐惧、轮椅、注射、静脉炎、住院……这些词曾经伴随着每一位血友病患者,而如今,他们的人生有机会翻篇改写!没问题诊所邀请了一位经历30多年病史的血友病患者赵先生,以及厦门大学附属第一医院血液科专家苏蕊教授,一起回顾血友病治疗的发展历程,从“按需止血”到“预防治疗”,再到如今改变“游戏规则”的非因子替代疗法。本期节目,我们将带你了解一段关于痛苦、坚持、医学进步与希望重燃的真实故事。时间轴0...去小宇宙查看完整单集简介在小宇宙查看该单集文稿

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EP47 一碰就出血的“玻璃人”!是什么让他们改写人生?!血友病还会关节变形?危及生命?

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