Connect
← Return to (MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
Discussion
(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
Re the conference.
Perhaps we need some statistical data gathered to try to help understand why some people get MAC and most don't. There must be more commonalities to all of this that is being missed. If we knew the cause, perhaps a better cure would become more apparent. Perhaps reoccurance could be stopped.
We are getting the same drugs they've been using to treat NTMs for years with no advances. There is no critical mass to our numbers, and so no money in trying to figure this out.
I think a better look at the possibity of "hidden" MAC, all the folks walking around with a cough, tired, not yet diagnosed. Also, they talk 8% growth rate. As our population ages with the boomers, is this growth rate perhaps much higher?
What about surgery. It's seems to be a pretty sure cure. Why isn't more done? Maybe too expensive or only allowed if drugs fail? There are some people on here MAC free for a few years, but let's face it, with drugs only it frequently comes back. Surgery seems to be an endgame for the disease. I'd like to get rid of this for my future years, not live on drugs that have many side effects long and short term.
It seems someone must be asking these questions and gathering info for the conference, but perhaps not. I cannot go due to a previous trip plan.
I'm sure someone going to the conference with MAC can better formulate these ideas.
Thanks. Comments and additions welcome.
Replies to "Re the conference. Perhaps we need some statistical data gathered to try to help understand why..."
Oooops, forget to follow up on the point you made about the increasing older<br>population - that is huge with regard to infection rates going way up in the<br>coming years (again, according to the research).
A reminder to all that I started a discussion for just this purpose - to gather info from/for us on research and to influence much needed research on this disease - think of it as a repository for all our ideas that we can then use for researchers, for all research info any of us can find so it can be shared with all, and for ways to push for research on better treatments that are long overdue. Here's the link: https://connect.mayoclinic.org/discussion/we-must-advocate-for-ourselves/?pg=1#post-232039
If all of us use it, the info/ideas gathered will be invaluable for doing all we can to get far better treatments!
Kay....l printed out this excellent list of questions to take with me to the conference...also added the great additional ones from Boomerexpert and Paula.and Heather...
terri D
Connect
All great stuff, Kay. And yes, researchers are clear that there's not only<br>many undiagnosed walking the world, but many who have been dx but because<br>there's no requirement to report cases as w/TB, no way to know how many.<br><br>What is known is that it's in the 10's of thousands, and growing<br>exponentially. As well, whereas MAC was an opportunistic disease confined<br>almost solely to HIV patients, it's now hitting the general population,<br>including people with healthy immune systems. Given the microbe is in everyone's water/soil, this is a potential epidemic in the making.