I was asked at the start of the year if I would write a little piece for the quarterly medical journal Dermatological Nursing, for their feature Patient Voice; I was asked to give a parents perspective on what it is like to live with the condition of Xeroderma Pigmentosum, from diagnosis through to daily life.
This article is in this month edition and I hope will raise awareness among their nursing readers.
“Nicola Miller recounts the shock and confusion of discovering her three-month-old baby suffered severe,
sunburn-like reactions to daylight; the frightening and frustrating journey to diagnosis and the terrifying weeks
spent straight afterwards in near-darkness. She describes the UV-protected life her family has learned to adapt
to and the challenges of giving her young son as ‘normal’ and carefree a life as possible”
Click link to read the full article x