1例营养不良性大疱性表皮松解症患者的护理

Nursing Care of One Patient with Dystrophic Epidermolysis Bullos

营养不良性大疱性表皮松解症(DEB)是一种临床罕见异质性的遗传性疾病,其特点是皮肤和黏膜极其脆弱,表现为不间断的皮肤水疱,并演变成慢性伤口、炎症和纤维化,严重者可继发手和脚畸形及上皮癌变,其治疗难度大,护理难度高。南方医科大学深圳医院于2021年9月收治1例DEB患者,在清创手术、创面封闭式负压引流术(VSD)及植皮术治疗的基础上,通过加强围手术期病室环境管理、管道护理、营养护理及皮肤护理等措施,现患者已康复出院。由于该病临床罕见,其相应的护理经验在国内鲜有报道,现将护理体会总结如下,以期为同行提供该病种患者围手术期护理的经验。

Dystrophic epidermolysis bullosa(DEB)is a rare clinical heterogeneity of hereditary disease,its characteristic is extremely fragile skin and mucosa,characterized by continuous skin blisters,and turned into a chronic wounds,inflammation,and fibrosis,severe cases can be secondary to the hand and foot deformity and epithelial cancer,its treatment is difficult,high difficulty of nursing.A patient with DEB was admitted to Shenzhen Hospital of Southern Medical University in September 2021.On the basis of debridement surgery,vacuum sealing drainage(VSD)and skin grafting,the patient has recovered and been discharged from hospital by strengthening perioperative environment management,pipeline nursing,nutritional nursing and skin care.Due to the rarity of this disease,its corresponding nursing experience is rarely reported in China.The nursing experience is summarized as follows,in order to provide colleagues with perioperative nursing experience of patients with this disease.