Bronchiectasis Patient Conference

@rosalynclifton I'm a latecomer to this thread but want to add my great appreciation for your efforts. It was my good luck that I checked into this thread after you had enlightened us so I could skip the process of registering, at this time!

A recording of the conference sessions is now available to view at: https://www.europeanlunginfo.org/bronchiectasis/patient-conference-2021

I enjoyed the conference and learned quite a bit from the sessions. VERY thankful for medical progress, because one of the speakers noted that in the 1940s the only real treatment for Bronchiectasis was surgical removal of part of the lungs!

I had surgical removal of my lung in 1986 and have bronchiectasis in the other after having pneumonia multiple times in three years. I am curious how many others in this group have? I am surprised it seems like a shock that happened in the ‘50s as it was still happening in the 80s. The good news is i am still here!

So sorry you've had to go through that ...but glad you're still here to share your thoughts with us! My pulmonologist talked to me about surgery, saying that removal of part of my lung would probably be necessary if we're not able to stop the progression of the disease.

Treatment and knowledge of this disease has come a long way which is wonderful. When I started this journey more than 40 years ago the doc told me it was a disease of the 1950s.

I just finished listening to the European Lung Foundation Bronchiectasis Patient Conference which was very informative. I learned a lot and now have many questions for my pulmonologist. Here’s the link info.
The recording of the ELF-EMBARC bronchiectasis patient conference is now available to view at: https://www.europeanlunginfo.org/bronchiectasis/patient-conference-2021

Please share the link with anyone you think would like to view the conference which included presentations from medical experts and people with bronchiectasis.

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@rosalynclifton Hi, Rosalyn. Several years ago, Mayo issued a list of signs ond symptoms of Gelsolin Amyloidosis. An "almost certain" sign is the diagnosis of chronic Bronchiectasis, according to that note. Since I have CB, and learned later that I have GSN (AGel) Amyloidosis, I think it would be wise to discuss this with your doctor. There is much information on Wikipedia and OMIM.org and ENSEMBL.

Thanks for the link to the conference. Very interesting speakers.
One thing that interests me is that they include NTM as one of the causes of bronchiectasis, which I’ve only heard once before in the NTM webinar that was just over a week ago.
Another thing is their efforts to find out the cause/etiology of bronchiectasis, which I’ve wondered about since I was diagnosed but no one has pursued this with me.
I, too, will have lots of questions for my doctor at my next appointment.

CK, I’d bet that bit of info cast a somber pall that took a while to neutralize and left you eager to join the “stop the progression” club. Don