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Clin Dermatol ; 37(3): 175-181, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31178100

RESUMO

Mal de Meleda is an hereditary palmoplantar keratoderma named for the Mljet Island in Croatia. The lives of those affected by this disease represent a complex situation that encompasses members of a vulnerable group. They require enlightenment and should be approached with awareness, taking into account their overall psychophysical status and the environment of each patient. Those afflicted with Mal de Meleda not only have to deal with a difficult life due to their affliction, but they also must cope with the hardships of socialization while trying to realize a normal life within their island community. This is compounded by the frequent interviews and examinations of researchers interested in the various aspects of their illness. The subject of this contribution is not about the nature of this disease, rather about the traces it has left on the (sub)consciousness of the population. It is also concerned with exploring ways of how to access patients and understanding the depth of their vulnerability. We present some thoughts tied to the interpersonal experiences of researchers and patients afflicted with Mal de Meleda.


Assuntos
Ceratodermia Palmar e Plantar , Estereotipagem , Conscientização , Croácia , Ética , História do Século XVIII , História do Século XIX , História do Século XX , História Medieval , Humanos , Ceratodermia Palmar e Plantar/genética , Ceratodermia Palmar e Plantar/história , Ceratodermia Palmar e Plantar/patologia , Ceratodermia Palmar e Plantar/psicologia , Hanseníase , Distância Psicológica , Qualidade de Vida , Isolamento Social , Rede Social , Percepção Social , Populações Vulneráveis
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