BMJ  2008;336:444-446 (23 February), doi:10.1136/bmj.39485.698356.AD

Practice

A Patient’s Journey

Xeroderma pigmentosum

Sandra Webb, mother, and founder of XP Support Group 1

1 XP Support Group, 2 Strawberry Close, Prestwood, Great Missenden HP16 0SG xpsg@btinternet.com

xpsg@btinternet.com

Alex Webb was 4 years old when he was diagnosed with xeroderma pigmentosum nine years ago. This is his story as told by his mother. His parents established a support group that is now widely recommended by consultant dermatologists

The first 150 words of the full text of this article appear below.

My son Alex was diagnosed with xeroderma pigmentosum at the age of 4 years. He was born in Germany and lived there for the first two years of his life. Before the diagnosis, he had had a series of severe sunburns, the first at the age of 7 weeks through a car window, and then the worst when he was 11 months old on a winter holiday in Austria. After this burn Alex was referred to a dermatologist, who dismissed it as "just sunburn" and said, "You mothers just don’t know what the sun can do."

Alex is a mixed race child, the second of two children. I had noticed that his cheeks turned red very quickly whenever he was exposed to the sun, so I made sure he always wore a factor 30 sunscreen. Yet he still managed to get burnt, usually in about 15 minutes. His sister did . . . [Full text of this article]


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