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[Growing up with an EBH, an example of pediatric-adult transition in the field of rare diseases]. / Grandir avec une EBH, un exemple de transition pédiatrie-service d'adultes dans le domaine des maladies rares.
Bourrat, Emmanuelle.
Afiliação
  • Bourrat E; Service de dermatologie, Centre de référence des maladies rares de la peau et des muqueuses d'origine génétique (Magec) Nord, Site Saint-Louis, Hôpital Saint-Louis, AP-HP, 1 avenue Claude-Vellefaux, 75010 Paris, France. Electronic address: emmanuelle.bourrat@aphp.fr.
Soins ; 68(880): 30-32, 2023 Nov.
Article em Fr | MEDLINE | ID: mdl-37931994
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.
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Texto completo: 1 Base de dados: MEDLINE Assunto principal: Epidermólise Bolhosa / Doenças Raras / Transição para Assistência do Adulto Limite: Adult / Child / Humans Idioma: Fr Revista: Soins Ano de publicação: 2023 Tipo de documento: Article

Texto completo: 1 Base de dados: MEDLINE Assunto principal: Epidermólise Bolhosa / Doenças Raras / Transição para Assistência do Adulto Limite: Adult / Child / Humans Idioma: Fr Revista: Soins Ano de publicação: 2023 Tipo de documento: Article