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Attending to psychosocial concerns for those with epidermolysis bullosa

from AJMC

Epidermolysis bullosa (EB) is a group of rare genetic disorders resulting in skin fragility and other symptoms, including blisters and wounds resulting from ordinary friction on the skin. A recent literature review, involving an international multidisciplinary panel of social and healthcare professionals and people living with EB, was conducted to create evidence-based guidelines to optimize psychosocial well-being in EB, given that there is no cure or treatment. EB management is primarily supportive, focusing on symptom control and wound care. Based on the review, six outcomes were found to be relevant with regard to the psychosocial health of those affected by EB. more


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