Elf Conference.

[Alberta56]

I was sorry to read that some of our members couldn't get into it. I hope ELF will simplify the process next year. As always there was a lot of interesting stuff on it, especially about new treatments being developed. Bronch is apparently no longer a 'rare' disease and several of the big pharmaceuticals are taking an interest in it. (Cynical me thinks there must be enough of us to make it worth their while.) There were some interesting demonstrations of different ways of lung clearing and rather dispiriting for me at least advice on exercise and eating more veggies. Wish I could do both, but usually fall short. Best thing was one speaker said 'find your tribe' for support and understanding. I don't need to do that. They're here!!! 🤗🤗🤗🎆🎆🎇🥂💖💖💖

[O2Trees]

Interesting Alberta. And not cynical, merely realistic!

[Patk1]

Thanx for that Alberta.yes we are a gd tribe 😊x

[djbctla]

Absolutely Alberta our tribe are here, we couldn’t ask for better. Bernardine 🤗🤗🤗

[Lfcpremier]

Thanks Albert. About time they made some progress with Bronchiectasis research. We are the poor relations in many respects. Xx

[Izb1]

Do you know if it was recorded and we could do a catch up ?? Im pleased to be part of this tribe and so glad we have it x

[Alberta56 in reply to Izb1]

Does anyone know how people who didn't register can access it?

[bwp91]

Yes it was recorded and everyone registered for the event will be sent the recording. B

[Reading4everyone]

Thank you Alberta56. It is good to hear that new treatments are being developed for bronchiectasis sufferers especially for the young sufferers. I believe that this disease was never “rare” but rarely diagnosed by the medical teams. I diagnosed my condition myself after sitting in a lecture about infectious diseases. I was 21 but believe that the disease was present at babyhood caused by mercury in Steadman’s teething powders. I also found this out accidently when researching “Pink” disease which I had at 6 months old. As. Result I have always felt that it was my responsibility to do as much for myself to stay as healthy as possible. The one thing I can’t do is prescribe my own treatment but I am now lucky to have some good Doctors looking after me and of course this great group to connect with. Sorry I didn’t intend to gone on at such length. Best wishes Marlybee.

[Alberta56]

I agree. I think this disease has been underrecorded and underresearched. Let's hope things improve. xxx