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 imp