小儿先天性大疱性表皮松解症的水疗治疗

I.L. Zakhartsova, V. D. Ostapishin
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摘要

大疱性表皮松解症(Epidermolysis bullosa, EB)属于一组遗传和临床异质性疾病,其特征是皮肤和粘膜形成水泡和糜烂,皮肤对轻微机械损伤(机械大疱性疾病)易感性和敏感性。根据未经证实的报告,在俄罗斯有2- 2500名先天性表皮松解症儿童。对于任何形式的EB都没有根治性的治疗方法。所有治疗措施都是姑息性的,主要目的是在最佳皮肤护理和受影响区域的帮助下,防止在其背景上产生伤害和水泡。自2018年以来,在索契联邦总统行政联邦国家预算机构“儿童医疗中心”分院的“Avangard”疗养院,在与“蝴蝶儿童”慈善基金会合作的框架内,先天性表皮松解症儿童接受康复和水疗治疗。专门为儿童制定的个体化治疗方案和心理援助,旨在预防新发皮疹的发生、水疱性和糜烂性溃疡性皮疹的消退,提高患者的生活质量。在我们为这些儿童工作期间,我们设法在治疗和康复方面取得了某些成果。小儿先天性BE的水疗治疗是综合治疗的重要组成部分。
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Spa Treatment of Children with Congenital Epidermolysis Bullosa
Epidermolysis bullosa (EB) belongs to the group of genetically and clinically heterogeneous diseases characterized by the formation of blisters and erosions on the skin and mucous membranes, vulnerability and sensitivity of the skin to minor mechanical injury (mechanobullous disease). According to unconfirmed reports, there are 2-2.5 thousand children with congenital epidermolysis in Russia. There are no radical methods of treatment for any form of EB. All therapeutic measures are palliative, aimed primarily at preventing injuries and blisters arising on their background with the help of optimal skin care and affected areas. Since 2018, in the ‘Avangard’ Sanatorium of the Branch of ‘Children's Medical Center’ the Federal State Budgetary Institution of the Administration of the President of RF in Sochi, within the framework of cooperation with the ‘Butterfly Children’ Charity Foundation, children with congenital epidermolysis receive rehabilitation and spa treatment. Individual treatment programs and psychological assistance specially developed for children are aimed at preventing the occurrence of new rashes, regression of vesicular and erosive-ulcerative rashes, improving the quality of life of patients. During our work with such children, we have managed to achieve certain results in treatment and rehabilitation. Spa treatment of children with congenital BE is an integral part of comprehensive treatment.
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