Psychological Counselling Centre of Rare Genetic Diseases, University of Gdańsk, Bażyńskiego 4, 80-309, Gdańsk, Poland.
Department of Quality of Life Research, Faculty of Health Sciences With the Institute of Maritime and Tropical Medicine, Medical University of Gdansk, Tuwima 15, 80-210, Gdańsk, Poland.
J Appl Genet. 2022 Sep;63(3):535-542. doi: 10.1007/s13353-022-00702-2. Epub 2022 May 8.
Mucopolysaccharidosis type IIIB (MPS IIIB or Sanfilippo syndrome type B) is an inherited metabolic disease caused by mutations in the NAGLU gene, encoding α-N-acetylglucosaminidase. Accumulation of undegraded heparan sulfate (one of glycosaminoglycans) arises from deficiency in this enzyme and leads to severe symptoms, especially related to dysfunctions of the central nervous system. Here, we describe a case of two siblings with highly diverse phenotypes, despite carrying the same mutations (c.1189 T > G/c.1211G > A (p.Phe397Val/p.Trp404Ter)) and similar residual activities of α-N-acetylglucosaminidase; the younger patient reveals more severe phenotype; thus, these differences cannot be explained by the age and progression of the disease. Surprisingly, the whole exome sequencing analysis indicated the presence of an additional mutation in one allele of the AUTS2 gene (c.157G > A (p.Ala53Thr)) in the younger patient but not in the older one. Since mutations in this gene are usually dominant and cause delayed development and intellectual disability, it is likely that the observed differences between the MPS IIIB siblings are due to the potentially pathogenic AUTS2 variant, present in one of them. This case confirms also that simultaneous occurrence of two ultra-rare diseases in one patient is actual, despite a low probability of such a combination. Moreover, it is worth noting that apart from the genotype-phenotype correlation and the importance of the residual activity of the deficient enzyme, efficiency of glycosaminoglycan synthesis and global secondary changes in expression of hundreds of genes may considerably modulate the course and severity of MPS, especially Sanfilippo disease.
黏多糖贮积症 IIIB 型(MPS IIIB 或 Sanfilippo 综合征 B 型)是一种遗传性代谢疾病,由 NAGLU 基因突变引起,该基因编码 α-N-乙酰氨基葡萄糖苷酶。由于该酶缺乏,未降解的硫酸乙酰肝素(一种糖胺聚糖)积累,导致严重症状,尤其是与中枢神经系统功能障碍有关。在这里,我们描述了两例具有高度不同表型的同胞病例,尽管携带相同的突变(c.1189T> G/c.1211G> A[p.Phe397Val/p.Trp404Ter])和相似的 α-N-乙酰氨基葡萄糖苷酶残留活性;年轻患者表现出更严重的表型;因此,这些差异不能用疾病的年龄和进展来解释。令人惊讶的是,全外显子组测序分析表明,年轻患者的 AUTS2 基因一个等位基因(c.157G> A[p.Ala53Thr])存在额外突变,但在年长患者中不存在。由于该基因的突变通常是显性的,会导致发育迟缓和智力障碍,因此,观察到的 MPS IIIB 同胞之间的差异很可能是由于他们其中之一存在潜在致病性的 AUTS2 变异。该病例还证实,尽管这种组合的可能性很低,但在一名患者中同时发生两种超罕见疾病是实际存在的。此外,值得注意的是,除了基因型-表型相关性和缺陷酶残留活性的重要性外,糖胺聚糖合成效率和数百个基因表达的全局二次变化可能会极大地调节 MPS 的病程和严重程度,尤其是 Sanfilippo 病。