Abstract:
: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.
journal_name
Clin Dermatoljournal_title
Clinics in dermatologyauthors
Bakija-Konsuo A,Zitinski M,Fatovic-Ferencic Sdoi
10.1016/j.clindermatol.2019.01.003subject
Has Abstractpub_date
2019-01-01 00:00:00pages
175-181issue
3eissn
0738-081Xissn
1879-1131pii
S0738-081X(19)30003-3journal_volume
37pub_type
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