Friday, June 15, 2007

Cystic fibrosis: patients' experience

An interesting article appears in the BMJ today:

Wicks E. A patient's journey: cystic fibrosis. BMJ 2007; 334(7606): 1270-1.

DOI: 10.1136/bmj.39188.741944.47

Two things especially caught my eye:

1 - when the author was diagnosed, her parents went to the library, having had no information about CF from the hospital. This was in the days before the Internet, so was some time ago. They found a 15 year old book, which advised that they should bond with their new baby too much. There are areas where books do get very out of date!

2 - "Patients need access to information about cystic fibrosis. If professionals do not provide the right information at the right time, patients will go and look for themselves. Plenty of good quality information is available, but there is just as much incorrect information, too, especially on the internet. Patients need to be able to filter out misleading facts, or have access to people who can guide them. " And so do students, and health professionals!


The Patient Connection said...

Cystic Fibrosis - a new research blog – please help


After looking at the comments I would like to take this opportunity to invite you to a research blog on Cystic Fibrosis. We thought that our blog is relevant to this discussion.

We are very interested in your thoughts so it would be great if you could have look at the blog and share your Cystic Fibrosis story.

To have a look (and to tell us what you think) please click this link

The blog is anonymous and easy to use. Instructions are given on the blog so thanks in advance for your help it is much appreciated.

Best wishes

The Patient Connection

Keith Nockels said...

Thanks for that. I will see if I can circulate this information to interested parties here.

I notice a mistake in my original posting, in that the 15 year old advice was that parents should *not* bond with their babies too much. Apologies.