Cystic Fibrosis Conference

On Tuesday I travelled to Birmingham for the first time for the Cystic Fibrosis Conference. Run by the CF Trust, I attended the second day aimed at family and friends to learn more about CF and meet some people. (They did a live stream on Facebook if anyone wants to catch up)

It was a really interesting morning and a mix of families, doctors, physios attended.

• Doctors talked about a wide variety of drugs on the market that are in the pipeline for 508D and other CF genotypes. The Doctors all sounded really positive about the research being done even if it does seem slow and there are set backs.

• You can ask your hospital for remote access instead of/ as well as Clinics. This appealed to me as I live over an hour away from hospital so being able to have an oxygen monitor and other technology might be beneficial. It would also be great to monitor Henry's levels in relation to pollution or pollen levels and see how badly his lungs are affected. But they did stress the importance of having face to face contact with your team as well as a Doctor being able to listen to the chest.

• Cross infection in hospitals seemed to be a big talking point and a real concern.

The morning session was finished up by a brilliant comedian/illustrator who is doing podcasts talking to a wide variety of people who are affected in one way or other by CF. And he has CF himself. I was lucky to meet him and his parents afterwards who were so lovely and it was such a positive experience to meet someone with CF and talk to his family who has been through everything I am. His podcast is called Straight From The Lungs / www.lungspodcast.co.uk

I then attended to afternoon session looking into physio:

• There were many CF physios there as well as Nuffield Health reps who said that some hospitals in the UK are able to give free gym/PT sessions to children up to the age of 18. So ask you hospital if they are signed up!

• The importance of a whole family being active was stressed and important for the CF child to see.

• That CF children they have asked find it helpful to have CF role models, other men and women near their own age they can look up to in terms of health and fitness and lifestyle.

• They mentioned that with boys their self-esteem may get abit low, that although they are capable of exercise they might get sweatier, more out of breath than their friends which can make boys have low self-esteem.

• Most importantly, that health and fitness is not just about CF but important for ALL children.

Overall it was a really positive experience and definately worth going. Although it was hours of listening to doctors talking about CF, drugs, life expectancy etc it reminded me of the overwhelming information when Henry was first diagnosed and all you think about is CF. It would have been great to meet more parents as due to cross infection we can't meet with our children.

I also really felt the huge community support, from meeting other family members, hearing the CF Trust talk about the importance of the community to help raise awareness, it made me realise how many of us are in this together and there to support each other.