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[Growing up with an EBH, an example of pediatric-adult transition in the field of rare diseases].
- 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.)
- Subjects :
- Adult
Child
Humans
Rare Diseases
Epidermolysis Bullosa
Transition to Adult Care
Subjects
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