Rare Disease Day: 29 February

‘Despite my illness I love life’

 ‘Despite my illness I love life’  ING-009
01 March 2024
Former “butterfly child” Claudia Campus tells her life story in a book entitled, “Perfettamente imperfetta” (Perfectly imperfect). “Butterfly children” is a term used to refer to the particular condition of kids affected by rare diseases that make them particularly fragile. Claudia Campus suffers from epidermolysis bullosa, a genetic pathology of the skin that also involves the mucous membranes. There is no curative therapy and advanced specific medications are required every day. “Those who suffer from my disease are called ‘butterfly children’. This description of the disease seemed strange to me because a butterfly is light while a disease is heavy”. These are the words Claudia Campus has written in her book entitled Perfettamente imperfetta (QuiEdit, Verona, 2023, Euro 13). Claudia, now aged 40, was born in Berchidda, a small ...

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