CF Together is a national organisation dedicated to advancing progress for people living with cystic fibrosis. We are dedicated to improving the lives of people living with CF. With a strong focus on providing support, advocacy, and research, our purpose is to drive progress for all Australian’s living with CF by enabling the CF community to access the best care and support, advocating for change, advancing treatment and finding a cure.
www.cftogether.org.au
Support: National CF Support Line: 1300 CF HELP (23 4357) support@cftogether.org.au Office: 1300 023 222 Email: enquiries@cfttogether.org,au
I LOVED watching this. I am so glad to see you living your best life. And it was lovely to see your mum again too. You are amazing George. Always were.
Catlin you keep showing them your strength and resilience. and always push forward you are a hero and your best friend is looking after you I am sure you know it Love you sweet heart and Hang in there xoxo
Has made me so grateful for my own situation watching this. Yes there has been a lot of water over the bridge but I had my childhood and teens and twenties. I am extremely grateful for that..
Your RU-vid video is not SEO optimized:- Your video content is really good. But views and subscriptions are very less. You need to do channel SEO to increase subscribers and views, meaning your video is not full SEO. Your SEO score is too low, SEO score you need to over 90. Video SEO and organic promotion are the main reasons why videos go viral. If you do SEO and promotion then your channel will get lots of subscribers and views. For now you can do channel SEO or video and organic promotion. Your channel will grow very fast. Because your video content ideas are very good. I can help grow Your channel ❤❤❤❤
Would have been better if you had specifics of tests in the video ! If there's one thing I can't stand is someone who's vague ! If you're making a video and go to the length of such, at least name the tests. Obviously wouldn't happen here in the eastern states. You would have been better off sending DNA to the USA and getting a quick response in several weeks. They do the entire sequence in a week or two. Yes, it costs, but far better than waiting a entire 9 years ! I'm wondering why in such a video you can't be specific or don't want to be, and didn't want to use your own initiative to figure things out ??? Typical brit. Can't talk about feelings
Colin, Did the any of the doctors give you a sweat test ? Did you suffer with sinus and lung congestion throughout life before your started to get very ill in Australia? Happy you have got your diagnosis and are doing well.
Sharon, you lift my spirits ! I had many friends who passed away in the 1990s some on the transplant list. And very much before pulmozyme I'm so excited about TRIKAFTA!!! I only wish this was available at the time my friends passed away in the late 1990s. Some while awaiting transplant some as young as 13. I think there is so much more to be done with CF and calorie intake and nutrition. Someone determined in the 90s to stop hospital made meals, and now outsourced (I have a relative who works in jail's out west NSW like orange, and the meals are snap frozen there and then reheated at the hospitals in all NSW facilities . I wouldn't feed this dog slop to a animal ! Bring your own if you have to stay in !
I would really love to understand CF sinus issues? I get blocked ears a lot!! I blow my nose quite a bit and I think that might be why I've never had sinus pain (well only once in my life do I remember it). My nose seems to be on a cycle where it's fairly clear for a few days or even up to a week or whatever and then... it's like I've got a minor infection. Blow that away and eventually it goes away and the cycle continues. I'm thinking I have some sort of bug with a life cycle in the couple of weeks category. Do you have 508 mutation? Would really like to understand sinus issues more? Does diet affect it? Dairy is a disaster for me...
Thank you for sharing. I am 65-1/2 & just diagnosed May 1 (in San Diego California. ) Have you been approved for modulator therapy? I know ~10% of the people with pathogenic mutations and diagnosed don’t have a ‘miracle med’ yet. I feel lucky that both of my pathogenic mutations are covered. I begin at a small dose next week. Wishing you all the best 🙏
I been having a really hard time with my son to take his meds and to do his vest treatments. I have tried so many ideas and ways but it's not working I'm at a loss..
Wow Melissa. Wonderful news for you. For those of us with other mutations its a bit like being the only kid in the class not invited to a birthday party. It's strangely okay though. My expectations are zero so it doesn't touch me and that's a tactically smart place to play the game.🎉
Hopeless in specific symptoms etc. Or tests. Don't know why he bothered to do this video. Hopeless symptoms. Hopeless video full stop. Didn't bother with gene screen. Ok pay for it a full screen via USA but, comprehensive!! A bit of a idiot making this video !!!!
Hey man. Thanks for sharing. I also have CF and just about your age. You're 100% right that we need to continue to get out of the house. It is so easy to just sit at home and wallow.
Hi harry I am Cheyenne. We meet with sue and jorja how has cf you are very nice sweet and kind and I can list a lot more but you will be reading this all day I was the one who dressed up as phar laps jockey 🏇🏾 I have watched all your recent races thanks for the racing.com appI can keep track of when you’re racing please reply
