LionheartLRJ

I've only been in this time for 3 days so far. My usual admission length is 2 weeks at a time about 3 months apart each time. I am now 20 and this has been happening since I was 18 months old so you can imagine that is quite some time, but you do get used to it.

Thank you for the best wishes too.

The short answer for the bulk of your question is that there is never going to be a "Cure" that can help me. The long answer is that there are several treatments being worked on to help alleviate the worst symptoms of CF. The main one being Gene Therapy, I was actually part of the clinical trials of this until I developed Liver disease (Owing to the number of drugs I am on) and that could well help people like me get on with "normal" lives for much longer periods.

In Response to what normal treatments I go through on a daily basis, I have to take several Nebulisers which helps to treat any infections in my lungs. When in hospital, I have a 2 week course of different IV drugs which are much stronger than normal and help to really "attack" any infection.

Thank you for helping any CF charity. It is always nice to hear about, and I know first hand The research it helps.

The best support method for me is that people treat me like normal. I don't like people making a fuss of me and I always try to keep the same attitude of being talkative a little bit cheeky to everyone. IMO the worst thing people can do is treat me like I am "Different" It can feel very degrading.

I personally love visitors but I would always check with the person in question (Or their parents) and I would brace yourself for a shock as sometimes (I know this through personal experience) the person in question can look a shadow of what you're used to seeing. Keep that in mind but on the whole I would recommend visiting.

The life expectancy is rising but I think it is currently mid 30s as a life expectancy and I have lost 3 friends this year alone. It can hurt losing friends when your young, I was 8 when my first friend died of CF when he was 10.