Use
A child with epidermolysis bullosa
Avoid
“Butterfly baby”, “cotton-wool child”, “baby with crystal skin”
Journalists occasionally use the term “butterfly children”, because it seems kinder or less harsh. But for most people, this term will be unclear, so it is better to use the medical term.
In addition, any romanticization of conditions, diseases and disorders also develops and provokes stigmatization. And it is also humiling and insulting, and focuses on the condition instead of the person, and this narrows the perception of the individual to their diagnosis.
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