Peyvandi Flora, Palla Roberta, Menegatti Marzia, Mannucci Pier Mannuccio
Angelo Bianchi Bonomi Hemophilia and Thrombosis Center, IRCCS Maggiore Hospital, Mangiagalli and Regina Elena Foundation, University of Milan, Milan, Italy.
Semin Thromb Hemost. 2009 Jun;35(4):349-55. doi: 10.1055/s-0029-1225757. Epub 2009 Jul 13.
Rare bleeding disorders (RBDs) are autosomal recessive diseases including the inherited deficiencies of coagulation factors such as fibrinogen, factor (F) II, FV, FV + FVIII, FVII, FX, FXI, FXIII, and multiple deficiency of vitamin K-dependent factors, with clinical manifestations ranging from mild to severe. They represent 3 to 5% of all the inherited coagulation deficiencies with a prevalence in the general population varying between 1 in 500,000 and 1 in 2 million, being higher in areas where consanguineous marriages are diffuse. Despite the progress made in past years, as a consequence of the rarity of these deficiencies, the type and severity of bleeding symptoms, the underlying molecular defects, the actual management of bleeding episodes and particularly the prophylactic treatment in patients affected with RBDs are not well established. In this introductory article, the main features, diagnosis, available treatment options, and treatment complications of RBDs will be discussed.
罕见出血性疾病(RBDs)是常染色体隐性疾病,包括纤维蛋白原、因子(F)II、FV、FV+FVIII、FVII、FX、FXI、FXIII等凝血因子的遗传性缺乏,以及维生素K依赖因子的多种缺乏,临床表现从轻度到重度不等。它们占所有遗传性凝血缺陷的3%至5%,在普通人群中的患病率在五十万分之一至二百万分之一之间,在近亲婚姻普遍的地区更高。尽管过去几年取得了进展,但由于这些缺陷的罕见性、出血症状的类型和严重程度、潜在的分子缺陷、出血发作的实际管理,特别是RBDs患者的预防性治疗尚未得到很好的确立。在这篇介绍性文章中,将讨论RBDs的主要特征、诊断、可用的治疗选择和治疗并发症。