Cystic fibrosis

doi:10.1136/bmj.39188.741944.47

BMJ 2007;334:1270-1271 (16 June), doi:10.1136/bmj.39188.741944.47

Practice

A patient's journey

Cystic fibrosis

Emma Wicks, expert patient adviser

Cystic Fibrosis Trust, Bromley, Kent BR1 1BY

ewicks@cftrust.org.uk

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

Introduction

As the Good Witch told Dorothy in the Wizard of Oz: it is alwaysbest to start at the beginning. Growing up, I always knew thatI had cystic fibrosis, the same way I knew I had blue eyes andmy cousins could all run faster than me.

I was lucky enough—though my parents did not think soat the time—to be diagnosed at two days old. The rightinformation at diagnosis is crucial. After being told theirdaughter had a disease whose name they could not spell, andwith no information from the hospital, my parents found outabout it for themselves. Parents nowadays might use the internet;mine went to the library. The book they found, printed 15 yearsearlier, told them to abandon all hope and not become too attachedto me.

Travelling alone

The road travelled with cystic fibrosis is often deserted, devoidof like minded companions. . . . [Full text of this article]

Companions on the journey

What adults with cystic fibrosis need

Losing the path

The good news

The bad news

Journey's end

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This article has been cited by other articles:

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