We usually think about breathing hazards in our environment in the form of smoke and fumes. But did you know that for people who are at risk, nontuberculous mycobacterial (NTM) lung disease is caused by exposure to mycobacteria found in soil and water? People with COPD are at greater risk for developing NTM lung disease, so although it is a rare infection, it’s important for people with COPD to know about it.
So, how can you learn about NTM lung disease? We all learn differently. We take in information in a variety of ways: by reading blog posts telling us about a disease, by seeing images, watching videos, listening to discussions, asking questions, and hearing patients tell their stories. In this blog post you will find links to an array of NTM lung disease information created by the COPD Foundation. Are you ready? Here we go!
Here is a series of four blog posts exploring the basics of NTM lung disease: what it is, how it is diagnosed and treated, and about resources and research.
NTM Lung Disease: What it is and What you Need to Know
NTM Lung Disease: How it is Diagnosed and What you Need to Know
NTM Lung Disease: Treatment and Management and What you Need to Know
NTM Lung Disease: Support Resources and Research and What you Need to Know
In this blog post you will meet Diane, a person living with NTM lung disease, and hear her story.
An Interview with Diane Gregg, a person living with nontuberculous mycobacterial
(NTM) lung disease.
This video, A Live Discussion about NTM Lung Disease, features Dariel, a person living with NTM lung disease, and Dr. Addrizzo-Harris, an NTM lung disease expert pulmonologist, talking about the importance of early diagnosis, risk factors, and signs and symptoms of NTM lung disease. You will learn about the challenges Dariel faces – and some solutions she has found – in living with this condition.
The Bronchiectasis and NTM Initiative website has a wealth of information about bronchiectasis and NTM lung disease. It is also home to an active online community of nearly 2,000 individuals. Here you can read questions, comments, and answers, and ask questions yourself if you wish. www.bronchiectasisandntminitiative.org
What about research? The Bronchiectasis and NTM Research Registry connects individuals who are looking for research studies to researchers who are looking for people who qualify. In this video, NTM lung disease expert, Dr. Pamela McShane, talks about the Bronchiectasis and NTM Research Registry | Bronchiectasis and NTM Initiative.
In a live webinar presented on Rare Disease Day last year, NTM lung disease expert pulmonologist, Dr. Ashwin Basavaraj, dives a bit deeper into the specifics of the disease. John, an individual living with NTM lung disease, shares his story about managing his disease and about personal advocacy. You will hear questions asked by members of the live audience with answers from the doctor and patient. Here is the recording of the “Let’s Talk about NontuberculousMycobacterial (NTM) Lung Disease” webinar.
On Rare Disease Day this year, this blog post asked, “What makes something a rare disease? How does a rare disease affect the people who have it? “Can observing Rare Disease Day, or other disease awareness days, really make a difference?” Take a look at our Check in - What is Rare Disease Day? (copdfoundation.org)
And here are two brief videos where NTM lung disease expert pulmonologist, Dr. Pamela McShane, presents An Introduction to NTM Lung Disease – Part I and An Introduction to NTM Lung Disease – Part II.
Living with a rare, complex lung disease is not easy—that’s for sure. And for some of us, learning about it is not easy either. But whether you’re a reader, a listener, a watcher, or a story lover, I hope you found this to be a helpful summary on how you can learn about NTM lung disease.