Dipartimento di Scienze Biomediche ed Oncologia Umana, Clinica Pediatrica, Università degli Studi di Bari Aldo Moro, Bari, Italy.
Ital J Pediatr. 2013 Apr 20;39:24. doi: 10.1186/1824-7288-39-24.
The hemophilias are the most common X-linked inherited bleeding disorders. The challenges in children are different from that in adults and, If not properly managed, can lead to chronic disease and lifelong disabilities. Currently, inhibitors are the most severe complication and prophylaxis is emerging as the optimal preventive care strategy. Quality of life has become in the western countries the primary objective of the process of providing care, thus all the strategies (psychotherapy, physiotherapy, community life), not just the infusion of the missing factor, should be activated for the patient and family to give them the perception of being healthy.
血友病是最常见的 X 连锁遗传性出血性疾病。儿童期的挑战与成人不同,如果管理不当,可能导致慢性疾病和终身残疾。目前,抑制剂是最严重的并发症,预防治疗已成为最佳的预防保健策略。生活质量已成为西方国家提供护理过程中的主要目标,因此,应该为患者及其家庭激活所有策略(心理治疗、物理治疗、社区生活),而不仅仅是输注缺失的因子,使他们感到健康。