Jemma from Jersey and Julie from Guernsey attended the UKCFC 2018 in Birmingham to represent the Channel Islands and report back on the latest developments and news for local families affected by CF. Jemma writes for us below.
“This time last week I was heading off for the CF Conference in Birmingham. I haven’t been to the conference for about 20 years, my daughter (wcf) is now 28!
The key difference between this conference and the last I attended was the feeling of ‘real’ hope. Treatments & knowledge have changed so radically over the years in terms of prevention & also around issues such as cross infection, having a big impact on quality of life & life expectancy.
Everyone wanted to hear about the precision medicines & it was great to hear from the likes of Gemma Weir, introduced as a ‘CF activist’, who is campaigning tirelessly for access to these treatments. The energy & enthusiasm of the young parents of today illustrates the real hope people are feeling. There is obvious frustration around access but also we heard about the amount of trials that are now taking place by other drug companies. The race is on & trials for the other drugs that will compliment the likes of Orkambi are in the 3rd phase. The good thing is that the competition between the drug companies will hopefully make things move faster & also maybe prices will come down!
There’s loads going on around the importance of nutrition & fitness & pilot studies are going on in the uk with children being provided with personal trainers. What came across was the importance of providing opportunities for children to stay fit & also positive modelling within families- so we all need to stay fit!!
I was slightly disappointed that there wasn’t much talk of the psychological impacts of living with a life threatening condition & all that entails, as I believe this to be such an important issue – but there’s always next time!”
We highly recommend you all take the time to watch some of the many different, fascinating and exciting presentations that were given during the UKCFC available through the CF Trust website at this link;