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

Practice

A patient's journey

Cystic fibrosis

Cystic Fibrosis Trust, Bromley, Kent BR1 1BY

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 always best to start at the beginning. Growing up, I always knew that I had cystic fibrosis, the same way I knew I had blue eyes and my cousins could all run faster than me.

I was lucky enough—though my parents did not think so at the time—to be diagnosed at two days old. The right information at diagnosis is crucial. After being told their daughter had a disease whose name they could not spell, and with no information from the hospital, my parents found out about it for themselves. Parents nowadays might use the internet; mine went to the library. The book they found, printed 15 years earlier, told them to abandon all hope and not become too attached to me.

Travelling alone

The road travelled with cystic fibrosis is often deserted, devoid of 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

A researcher's perspective
Useful resources

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