Battelino Nina, Writzl Karin, Bratanič Nevenka, Irving Melita D, Novljan Gregor
Department of Pediatric Nephrology, University Medical Centre Ljubljana, Ljubljana, Slovenia.
Institutes of Medical Genetics, University Medical Centre Ljubljana, Ljubljana, Slovenia.
Ther Apher Dial. 2016 Jun;20(3):318-21. doi: 10.1111/1744-9987.12444.
Hajdu-Cheney syndrome (HJCYS) is a rare, autosomal dominant, skeletal disorder caused by mutations in the NOTCH2 signaling pathway for which genetic testing has recently become available. Renal abnormalities are associated in at least 10% of cases. We present an 8-year-old Caucasian boy, born with multiple dysmorphic features consistent with HJCYS. Imaging of the urinary tract revealed bilateral cystic dysplastic kidneys with associated vesicoureteral reflux. Renal function has been impaired since birth and deteriorated progressively to end-stage renal disease (ESRD) by the age of two and a half years, when peritoneal dialysis was initiated and only recently renal transplantation was performed. Additional congenital abnormalities and multisystem involvement in HJCYS further complicated management, and he developed refractory anemia. Molecular diagnosis was confirmed by identification of a truncating mutation in exon 34 of NOTCH2. Although, renal abnormalities are considered an integral part of the HJCYS, published reports on ESRD are scarce. In those few published cases, where ESRD was recognized, renal failure developed either in late adolescence or adulthood. This is the first report of early ESRD occurring in a child. Patients with HJCYS may need chronic renal replacement therapy even in early childhood. The management of these children can be challenging given the multisystemic manifestations of HJCYS.
哈伊杜-切尼综合征(HJCYS)是一种罕见的常染色体显性遗传性骨骼疾病,由NOTCH2信号通路突变引起,最近已有相关基因检测方法。至少10%的病例伴有肾脏异常。我们报告一名8岁的白种男孩,出生时具有与HJCYS一致的多种畸形特征。泌尿系统成像显示双侧多囊性发育不良肾,并伴有膀胱输尿管反流。自出生以来肾功能就受损,到两岁半时逐渐恶化为终末期肾病(ESRD),当时开始进行腹膜透析,最近才进行了肾移植。HJCYS中额外的先天性异常和多系统受累使治疗更加复杂,并且他还出现了难治性贫血。通过鉴定NOTCH2第34外显子的截断突变确诊了分子诊断。虽然肾脏异常被认为是HJCYS的一个组成部分,但关于ESRD的已发表报告很少。在少数已发表的确诊ESRD的病例中,肾衰竭发生在青春期晚期或成年期。这是第一例儿童期发生早期ESRD的报告。即使在儿童早期,HJCYS患者也可能需要慢性肾脏替代治疗。鉴于HJCYS的多系统表现,这些儿童的治疗具有挑战性。