‘Stunned mullet!’

That’s the only way I can describe how I felt when I was diagnosed with Nontuberculous Mycobacteria (NTM) lung disease in November 2021.
You’re probably reading this feeling much the same way many of us did at the start – isolated, bemused, and unsure what questions to even ask. Your GP may have done their best, but in New Zealand this condition is not common, and you are possibly their first patient with NTM lung disease.
I had spent years not quite “being right.” When the diagnosis finally came, there was almost no information available here in New Zealand. No one to compare notes with, no one to answer my questions. There was no clear pathway.
So I started searching.
I read everything I could find. I joined overseas peer support groups. I asked questions, I listened, I learned that to navigate this condition well, I would need to advocate for myself.
Very quickly, I realised something else: no one else here in New Zealand should have to start this journey alone.
I completed several Patient Ambassador courses and was later invited by NTM Information & Research to become the New Zealand support group leader. I am also involved with the Asthma & Respiratory Foundation NZ, the Bronchiectasis & NTM Association, and NTM Patient Care UK, and have contributed to the development of NTM Standards of Care for the NHS.
But information scattered across the world isn’t helpful if people here can’t find it.
The only way to bring trusted information together in one place for patients, whānau and health professionals, was to create this website.
So, here it is.
This site exists so that when you search for answers, you will find reliable information.
This has been a collective effort. It would not have been possible without the backing of NTMir, the invaluable skills of Mary, all those who help us check and edit the information, and the lived wisdom of our support group members.
Sue
 NZ Peer Support Group Leader for NTMir and Patient