Department of Pediatrics, Hospital Sant Joan de Déu, University of Barcelona, Barcelona, Spain.
Department of Genetic and Molecular Medicine, Hospital Sant Joan de Déu, University of Barcelona, Barcelona, Spain.
Hum Mutat. 2018 Dec;39(12):1752-1763. doi: 10.1002/humu.23638. Epub 2018 Sep 17.
Hyaline fibromatosis syndrome (HFS) is the unifying term for infantile systemic hyalinosis and juvenile hyaline fibromatosis. HFS is a rare autosomal recessive disorder of the connective tissue caused by mutations in the gene for anthrax toxin receptor-2 (ANTXR2). It is characterized by abnormal growth of hyalinized fibrous tissue with cutaneous, mucosal, osteoarticular, and systemic involvement. We reviewed the 84 published cases and their molecular findings, aiming to gain insight into the clinical features, prognostic factors, and phenotype-genotype correlations. Extreme pain at minimal handling in a newborn is the presentation pattern most frequently seen in grade 4 patients (life-limiting disease). Gingival hypertrophy and subcutaneous nodules are some of the disease hallmarks. Though painful joint stiffness and contractures are almost universal, weakness and hypotonia may also be present. Causes of death are intractable diarrhea, recurrent infections, and organ failure. Median age of death of grade 4 cases is 15.0 months (p25-p75: 9.5-24.0). This review provides evidence to reinforce the previous hypothesis that missense mutations in exons 1-12 and mutations leading to a premature stop codon lead to the severe form of the disease, while missense pathogenic variants in exons 13-17 lead to the mild form of the disease. Multidisciplinary team approach is recommended.
纤维瘤样透明变性综合征(HFS)是婴儿全身性透明变性和青少年透明纤维瘤样变性的统称。HFS 是一种罕见的常染色体隐性结缔组织疾病,由炭疽毒素受体 2(ANTXR2)基因突变引起。其特征是透明纤维组织异常生长,伴有皮肤、黏膜、骨关节炎和全身受累。我们回顾了 84 例已发表的病例及其分子发现,旨在深入了解其临床特征、预后因素和表型-基因型相关性。新生儿在轻微处理时出现极度疼痛是 4 级患者(生命受限疾病)最常见的表现模式。牙龈肥大和皮下结节是该疾病的一些特征标志。尽管疼痛性关节僵硬和挛缩几乎普遍存在,但也可能存在无力和低张力。死亡原因是难治性腹泻、反复感染和器官衰竭。4 级病例的中位死亡年龄为 15.0 个月(p25-p75:9.5-24.0)。本综述提供的证据证实了先前的假设,即外显子 1-12 中的错义突变和导致提前终止密码子的突变导致疾病的严重形式,而外显子 13-17 中的错义致病性变异导致疾病的轻度形式。建议采用多学科团队方法。