The needs of parents with children suffering from lethal epidermolysis bullosa.

@article{Yuen2012TheNO,
  title={The needs of parents with children suffering from lethal epidermolysis bullosa.},
  author={Wing Yan Yuen and Jos{\'e} C. Duipmans and Marcel F. Jonkman},
  journal={The British journal of dermatology},
  year={2012},
  volume={167 3},
  pages={613-8}
}
BACKGROUND Some subtypes of the heterogeneous genetic blistering disease epidermolysis bullosa (EB) lead to lethality in childhood. The severity and extent of blistering leaves these patients living in excruciating pain and distress their entire lives. Parents of these patients experience some specific problems, such as the unfamiliarity of EB amongst healthcare professionals and the suffering and loss of their child. OBJECTIVE To identify the needs of parents who have lost their child to… CONTINUE READING