Are you aged 16-40 and have a lung co... - Lung Conditions C...
Are you aged 16-40 and have a lung condition? If so, where do you get support from?
Please comment if you have any ideas how the BLF can offer support to younger people with lung conditions . Thank you.
I have a rare lung condition and it's hard to find information etc I would use this forum or there are two Facebook groups based on my condition that I would use too
I also have a rare lung condition (PPFE) Elisa. I don't know anyone else who has it so have reached out to people on Health Unlocked as whilst I haven't found anyone with the same condition people on here are going through similar issues to me and can relate to many of the issues that I face.
No Facebook groups for me. Would set one up but wouldn't know where to start looking for others to join it!
I have copd respiratory type 2 asthma broncechtisis emphysema
I get info from where ever I can and use it there is no organization or personal information group it's hard
Maybe a specific chat group for younger patients?
I think this would be a great idea. A young group on here or even a closed Facebook group. Those groups work really well I find and I'm a member of one for blood cancer which has been a huge support.
I think that would be useful, I really struggled coping with my bronchiectasis when I was young especially at school as it is an embarrassing illness due to the coughing and having to cough up mucus, I think chat groups for same age groups would be great but the help, knowledge and experience from everybody on her seems priceless. It certainly has made me feel less isolated hearing from each and everyone of you lovely people on here 💞
Keep-positive. I actually work at the BLF and have been talking to the team about creating an area of the site aimed at those that are in a slightly younger age group. Watch this space!
I agree 100% about how useful the group as a whole is though - it's brilliant and has really helped me since I joined. Really hope that you're well at the moment and that you're keeping on top of the bronchiectasis.
Aw...thank you dodgylungrunner, winter months are always a struggle as you know, looking forward to the better weather. I'm off to Lanzarote soon, a wee break in the sunshine will be a great help ☀️.
Hey that's a great idea, hopefully you will get the go ahead and it will be up and running soon 🤞.
Oh you work at the BLF ? I've tried Breathe Easy , it's a really helpful group but unfortunately not for me. Was mostly elderly people who attended, because I was younger and "looked healthy" they had me doing all the chores teas/coffees etc hah
( they were probably healthier than me) lol. I wanted to find out more about my condition and was hoping to meet people with things in common.
I actually attended a BLF conference years ago which was fantasic, I learned so much from the many health professionals I spoke to .
Hey...I would really appreciate it if you could let me know how it goes with your fabulous idea, good luck 🤞.
Really hope you are feeling much better too !
I didn't even know a Clinical Nurse Specialist that I could contact existed until a few weeks ago even though I've had my lung disease for 4 years now. Communication is so important and I think the clinics should do more to highlight the support services that are available. Literature on groups like this would also have been handy.
