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MAC & Bronchiectasis | Last Active: 5 days ago | Replies (26)
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I agree with you. And the last thing I want is anything that dries up or reduces the natural mucus being created in my lungs due to the bronchiectasis. Hope springs eternal and a tablet to make it all better sounds so simple and elegant.
How was the NYU conference? Anything new and interesting being presented? Maybe it will be on YouTube soon.
Replies to "I agree with you. And the last thing I want is anything that dries up or..."
Agree! Seems the culture and advertisement industry has done a good job on training our brains to think taking a pill will cure things. That would be great if it were true.
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@scoop I only attended the patient portion, which is on You Tube:
https://m.youtube.com/watch?v=Pr61jfiR7Q4
I am going for genetic counseling soon so found that discussion particularly interesting and one not covered in a similar depth in prior presentations I have attended. The presenters all had a lot of ground to cover and spoke super quickly so I actually think watching on you tube where you can pause, go back, etc., will be an easier way to digest. I have already re-listened to several of the speakers and plan to re-listen to all of them to make sure I didn’t miss anything. In addition to the genetics discussion, another stand out piece of information came through Linda who attended in person. She learned that in addition to US treating guidelines, which should be coming out first or second quarter of 2025, there will also be simplified and more straightforward standards of care published that those who cannot get to one of the newly designated care centers (1st batch to be announced soon) can take to their local doctors and say “I NEED THIS!”. That seems invaluable and I hope the standards of care come out soon, but apparently will be after the US guidelines are published so maybe later part of the year.