1例ⅱ型粘多糖病患者14年酶替代治疗的临床结果

N. Zhurkova, N. Vashakmadze, Ludmila K. Mikhaylova, Marina A. Babaykina, N. Fedorova, E. Voskoboeva, E. Zakharova, L. Namazova-Baranova
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摘要

背景。粘多糖病II型(MPS II)是一种罕见的遗传性溶酶体贮积病,病程进行性发展。对于这种疾病有有效的酶替代疗法(ERT),它可以防止严重并发症的发展,提高患者的生活质量。需要对接受ERT治疗的个体的健康变化进行长期随访,以评估治疗对疾病进展的影响,并最终对患者及其家人的生活质量产生影响。临床病例描述。MPS II患者14年的随访结果,他是俄罗斯第一个接受伊杜硫酶ERT治疗的患者。结果显示患儿生长改善,鼻窦器官感染频率减少,肝脏和脾脏大小减小,总体稳定,心血管和呼吸事件无进展,尿中糖胺聚糖水平正常。结论。伊杜硫酶长期治疗严重MPS II可稳定患者的躯体状况,防止心血管和呼吸系统严重并发症的发生,提高患者及其家人的生活质量。尿糖胺聚糖水平的降低是治疗效果的重要指标,也是患者整体身体状态的重要指标。
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Results of 14-year-long Enzyme Replacement Therapy in a Patient with Mucopolysaccharidosis Type II: Clinical Case
Background. Mucopolysaccharidosis type II (MPS II) is a rare hereditary disease from the group of lysosomal storage diseases, with progressive course. There is effective enzyme replacement therapy (ERT) for this disease, it prevents the development of severe complications and improves patients’ quality of life. Long-term follow-up of health changes in individuals on ERT is required for evaluating the treatment impact on disease progression and eventually on the quality of life of the patient and his family. Clinical case description. Results of 14-year-long follow-up of the patient with MPS II who was the first patient on ERT with idursulfase in Russia are presented. Improvement of growth, decrease in ENT-organs infections frequency, liver and spleen sizes decrease, general stabilization, no progression in cardiovascular and respiratory events, normal levels of glycosaminoglycans in urine are shown. Conclusion. Long-term therapy with idursulfase in severe MPS II stabilizes the patient’s somatic condition, prevents the development of severe complications in cardiovascular and respiratory systems, improves the quality of life of the patient and his family. Urinary glycosaminoglycans level decrease is the important indicator of the therapy efficacy along with overall patient's somatic state.
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