Sousa Martins Rute, Rocha Sara, Guimas Arlindo, Ribeiro Rosa
Internal Medicine, Centro Hospitalar Universitário do Porto, Porto, PRT.
Cureus. 2022 Feb 7;14(2):e21985. doi: 10.7759/cureus.21985. eCollection 2022 Feb.
Hunter syndrome is a rare lysosomal storage disorder with systemic involvement that occurs over time. Affected patients have coarse facial features, growth retardation with short stature, and skeletal deformities called dysostosis multiplex; joint stiffness, progressive mental retardation, and organomegaly are some of the clinical signs. It ranges from mild to severe manifestations and the distinction between them is related to neurological involvement. Cardiac and respiratory failure is commonly the cause of early death (before adulthood) for severe forms, but those with attenuated forms who have normal cognitive development can survive until late adulthood. Treatment with enzyme replacement therapy is available and can improve the prognosis of this disease. The authors present a case of a 36-year-old male with Hunter syndrome to show not only the clinical features typical of this multisystemic disease that should alert to a prompt investigation but also to remind that treatment must start as early as possible to reach the best outcome. Management of this disease is typically challenging and requires a multidisciplinary approach.
亨特综合征是一种罕见的溶酶体贮积症,会随着时间推移出现全身性病变。受影响的患者面部特征粗糙,生长发育迟缓导致身材矮小,还有称为多发性骨发育异常的骨骼畸形;关节僵硬、进行性智力发育迟缓以及器官肿大是一些临床症状。其表现从轻到重不等,两者的区别与神经受累情况有关。严重类型的患者通常因心脏和呼吸衰竭在成年前过早死亡,但认知发育正常的症状较轻的患者可以存活到成年后期。酶替代疗法可用于治疗,能改善这种疾病的预后。作者介绍了一例36岁男性亨特综合征患者的病例,不仅展示了这种多系统疾病的典型临床特征,这些特征应提醒及时进行调查,还提醒必须尽早开始治疗以达到最佳效果。这种疾病的管理通常具有挑战性,需要多学科方法。