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[Growing up with an EBH, an example of pediatric-adult transition in the field of rare diseases].

Authors :
Bourrat E
Source :
Soins; la revue de reference infirmiere [Soins] 2023 Nov; Vol. 68 (880), pp. 30-32. Date of Electronic Publication: 2023 Oct 20.
Publication Year :
2023

Abstract

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.<br /> (Copyright © 2023 Elsevier Masson SAS. All rights reserved.)

Details

Language :
French
ISSN :
0038-0814
Volume :
68
Issue :
880
Database :
MEDLINE
Journal :
Soins; la revue de reference infirmiere
Publication Type :
Academic Journal
Accession number :
37931994
Full Text :
https://doi.org/10.1016/j.soin.2023.09.008