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血友病是一组X连锁隐形遗传性出血性疾病,主要表现为自发性出血或外伤、手术后出血,反复关节肌肉出血可以致残,危险部位出血甚至威胁生命。替代治疗是血友病唯一有效的治疗方法,同时需要康复、理疗、护理、心理关怀等综合治疗。治疗理念已从出血后按需治疗发展为预防治疗,未来的发展方向将是基因检测阻断患者出生,长效凝血因子的输注以及基因治疗等,从而使患者彻底摆脱疾病的困扰。
Hemophilia is a group X stealth hereditary hemorrhagic disease, mainly manifested as spontaneous bleeding or trauma, bleeding after surgery, repeated joint muscle bleeding can be disabled, dangerous parts of the bleeding or even life-threatening. Alternative treatment is the only effective treatment for hemophilia and requires a combination of rehabilitation, physiotherapy, nursing and psychological care. The concept of treatment has evolved from on-demand treatment to preventative treatment after hemorrhage. Future directions of development will be gene detection to block the birth of patients, infusion of long-acting coagulation factors, gene therapy and the like, so as to completely rid the patients of diseases.