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Brensocatib timetable to market
MAC & Bronchiectasis | Last Active: 2 days ago | Replies (36)Comment receiving replies
I am really struggling to find any support groups and feel very alone in tackling this disease hoping someone in this forum could perhaps point me in the right direction. Thanks in anticipation
Replies to "I am really struggling to find any support groups and feel very alone in tackling this..."
Where are you located? I'm not a big facebook person, but have heard there is a facebook group which may be more personal. I agree, this site is very warm and supportive and I am so glad I found it. I do feel a need for more human contact. I live alone with my adult son with Down Syndrome. I have many side effects from the anti-biotics and the day to day is difficult. Please keep me posted if you find anything-I may join that as well. Good luck! Kathy
Check out "Bronchiectasis: Lets Support N Share Awareness!!" on Facebook, 14,000 members. You might find what you're looking for there.
Personally, I'd stay away from "Lung Matters: Covid, Bronchiectasis, MAC, NTM, Nocardia, Pseudomonas & More" as they tend to be authoritarian and less supportive, which shows in their membership (6,700 members).
You might search Facebook for "bronchiectasis" and quite a few other support groups come up.
It is overwhelming when you are first diagnosed. Once you get more info it should help. NTMir has support groups by zoom. If you can’t find it let me know and I’ll try to find the link.
When I was first diagnosed with NTM back in 2022 I felt lost and it was only through research that I found all these amazing forums where people understand what you are going through. I live in London and have been in contact with Shirley Haywood. She is a lovely lady. In my opinion the US is way ahead especially where airway clearance is concerned. Professor Marc Lipman is based at the Royal Free hospital and he is so lovely to listen to. He knows his stuff. Just thought I would reach out to you - not sure if you are living in the UK. Take care, Niamh
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Welcome to the group. I’m really sorry you need to be here, but think you’ll find it a very welcoming and helpful group.
A suggestion-make a new post with this question. It might not be seen by most members if they aren’t looking for Benzocatib info.
I suggest you add how long you’ve been had bronchiectasis, if you have MAC, your treatment routine,area you’re in, and questions. Feel free to omit those and just ask you questions.