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@darlindawn

I was diagnosed 3 weeks ago but it looks like I have had it since late 2020. I hope that airway clearance is something that they will teach me at The U because I am so new to this. I have been the type of person that is horribly embarrassed to cough my entire life. I have taught myself subconsciously to do everything not to. Thank you for your response. I was reading something in my blood work and thought that it meant that it was genetic and I had a complete meltdown. Having everything blamed on having Elhers Danlos is devastating. I have deteriorated in the last to years so badly I need some hope. I haven’t started treatment yet. I start go to my first appointment in July

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Replies to "I was diagnosed 3 weeks ago but it looks like I have had it since late..."

Here is your hope. You can be cured from MAC. I tried the Big 3 for a very long time, but the MAC did not go away. I finally was in a clinical trial of Arikayce back in 2020 and maybe even before that. I’d have to go check. The Arikayce cured me of MAC. So yes, you can be cured!! Wishing you the best of luck. (irene5))

How do you know when you got it? I would like to know how long this has been in my lungs.