{"title":"[与EBH一起长大,这是罕见病领域儿童-成人转变的一个例子]。","authors":"Emmanuelle Bourrat","doi":"10.1016/j.soin.2023.09.008","DOIUrl":null,"url":null,"abstract":"<p><p>The transition from pediatrics to adult wards concerns all chronic diseases with a pediatric onset, but there are a number of specific features in the case of severe forms of hereditary epidermolysis bullosa: worsening wound surface and chronicity with age, appearance or increase in certain complications (carcinological, renal, nutritional, dental), sometimes difficult therapeutic choices, sometimes life-threatening prognosis. But one of the major problems limiting the patient's autonomy is the difficulty of finding a paramedic to take over skin care, often provided from birth by a parent who has become a caregiver through necessity.</p>","PeriodicalId":35573,"journal":{"name":"Soins; la revue de reference infirmiere","volume":null,"pages":null},"PeriodicalIF":0.0000,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"[Growing up with an EBH, an example of pediatric-adult transition in the field of rare diseases].\",\"authors\":\"Emmanuelle Bourrat\",\"doi\":\"10.1016/j.soin.2023.09.008\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><p>The transition from pediatrics to adult wards concerns all chronic diseases with a pediatric onset, but there are a number of specific features in the case of severe forms of hereditary epidermolysis bullosa: worsening wound surface and chronicity with age, appearance or increase in certain complications (carcinological, renal, nutritional, dental), sometimes difficult therapeutic choices, sometimes life-threatening prognosis. But one of the major problems limiting the patient's autonomy is the difficulty of finding a paramedic to take over skin care, often provided from birth by a parent who has become a caregiver through necessity.</p>\",\"PeriodicalId\":35573,\"journal\":{\"name\":\"Soins; la revue de reference infirmiere\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":0.0000,\"publicationDate\":\"2023-11-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Soins; la revue de reference infirmiere\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.1016/j.soin.2023.09.008\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"2023/10/20 0:00:00\",\"PubModel\":\"Epub\",\"JCR\":\"Q4\",\"JCRName\":\"Nursing\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Soins; la revue de reference infirmiere","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1016/j.soin.2023.09.008","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2023/10/20 0:00:00","PubModel":"Epub","JCR":"Q4","JCRName":"Nursing","Score":null,"Total":0}
[Growing up with an EBH, an example of pediatric-adult transition in the field of rare diseases].
The transition from pediatrics to adult wards concerns all chronic diseases with a pediatric onset, but there are a number of specific features in the case of severe forms of hereditary epidermolysis bullosa: worsening wound surface and chronicity with age, appearance or increase in certain complications (carcinological, renal, nutritional, dental), sometimes difficult therapeutic choices, sometimes life-threatening prognosis. But one of the major problems limiting the patient's autonomy is the difficulty of finding a paramedic to take over skin care, often provided from birth by a parent who has become a caregiver through necessity.
期刊介绍:
La revue Soins adresse a toutes celles et ceux qui ont choisi la profession infirmière : en cours études et en exercice, hospitaliers et libéraux, cadres et non cadres. Cette revue a deux objectifs majeurs : former aux savoirs et aux pratiques nécessaires a un exercice infirmier de qualité, et informer au plus près de le actualité professionnelle, sanitaire et sociale susceptible de modifier les pratiques professionnelles des infirmier(e)s.