Di Pierro Elena, Brancaleoni Valentina, Granata Francesca
U.O. di Medicina Interna, Fondazione IRCCS Cà Granda - Ospedale Maggiore Policlinico, Milano, Italy.
Br J Haematol. 2016 May;173(3):365-79. doi: 10.1111/bjh.13978. Epub 2016 Mar 11.
Congenital erythropoietic porphyria (CEP) is a rare genetic disease resulting from the remarkable deficient activity of uroporphyrinogen III synthase, the fourth enzyme of the haem biosynthetic pathway. This enzyme defect results in overproduction of the non-physiological and pathogenic porphyrin isomers, uroporphyrin I and coproporphyrin I. The predominant clinical characteristics of CEP include bullous cutaneous photosensitivity to visible light from early infancy, progressive photomutilation and chronic haemolytic anaemia. The severity of clinical manifestations is markedly heterogeneous among patients; and interdependence between disease severity and porphyrin amount in the tissues has been pointed out. A more pronounced endogenous production of porphyrins concomitant to activation of ALAS2, the first and rate-limiting of the haem synthesis enzymes in erythroid cells, has also been reported. CEP is inherited as autosomal recessive or X-linked trait due to mutations in UROS or GATA1 genes; however an involvement of other causative or modifier genes cannot be ruled out.
先天性红细胞生成性卟啉病(CEP)是一种罕见的遗传性疾病,由血红素生物合成途径的第四个酶——尿卟啉原III合酶活性显著缺乏所致。这种酶缺陷导致非生理性和致病性卟啉异构体尿卟啉I和粪卟啉I过度产生。CEP的主要临床特征包括从婴儿早期开始对可见光的大疱性皮肤光敏性、进行性光致 mutilation(此处原文可能有误,推测为“致残”之类意思,暂按字面)和慢性溶血性贫血。患者之间临床表现的严重程度明显异质性;并且已经指出疾病严重程度与组织中卟啉量之间存在相互依存关系。还报道了与红系细胞中血红素合成酶的第一个且限速的酶——ALAS2激活相伴的更明显的内源性卟啉产生。CEP由于UROS或GATA1基因突变而以常染色体隐性或X连锁性状遗传;然而不能排除其他致病或修饰基因的参与。