Corujeira Susana, Águeda Sofia, Monteiro Georgina, Canelhas Aurea, Sampaio Mafalda, Rocha Ruben, Leão Miguel
Pediatric Department, São João Hospital, Porto, Portugal.
Eur J Med Genet. 2013 Nov;56(11):603-5. doi: 10.1016/j.ejmg.2013.09.005. Epub 2013 Sep 30.
The ichthyosis follicular with atrichia and photophobia syndrome (IFAP) is a rare X-linked multiple congenital malformation syndrome. Some male patients have additional features including brain anomalies, intellectual disability, ectodermal dysplasia, skeletal deformities, ear or eye anomalies and kidney dysplasia/hypoplasia (BRESEK syndrome) sometimes associated with Hirschsprung disease and cleft palate or cryptorchidism (BRESHECK syndrome). We report a 5 months-old male patient with the p.R429H mutation in MBTPS2 protein, which has been reported to be associated with the most severe phenotype of patients with IFAP/BRESHECK syndrome. This patient presented with a severe IFAP/BRESHECK phenotype including ichthyosis follicular, atrichia, photophobia, brain anomalies, global developmental delay, Hirschsprung disease and kidney hypoplasia. Additional features not previously reported in IFAP syndrome, include severe hypogammaglobulinemia and congenital rectourethral fistula.
毛囊性鱼鳞病伴无毛症和畏光综合征(IFAP)是一种罕见的X连锁多发性先天性畸形综合征。一些男性患者还有其他特征,包括脑异常、智力残疾、外胚层发育不良、骨骼畸形、耳或眼异常以及肾发育不全/发育不良(BRESEK综合征),有时与先天性巨结肠和腭裂或隐睾症相关(BRESHECK综合征)。我们报告了一名5个月大的男性患者,其MBTPS2蛋白存在p.R429H突变,该突变已被报道与IFAP/BRESHECK综合征患者最严重的表型相关。该患者表现出严重的IFAP/BRESHECK表型,包括毛囊性鱼鳞病、无毛症、畏光、脑异常、全面发育迟缓、先天性巨结肠和肾发育不全。IFAP综合征以前未报道过的其他特征包括严重低丙种球蛋白血症和先天性直肠尿道瘘。