The importance of NTM lung disease education: A teacher’s journey to diagnosis

The importance of NTM lung disease education: A teacher’s journey to diagnosis

(BPT) – Donna was an active school teacher who loved tennis and bike riding, until one day, she coughed up a small amount of blood. Her coughing, coupled with constantly feeling out of breath, put Donna on a journey of misdiagnosis, hospitalizations and fear.

Donna saw multiple doctors and underwent several tests in the hopes of diagnosing and managing her condition. Eventually, Donna was diagnosed with nontuberculous mycobacterial (NTM) lung disease, which is an infection caused by bacteria that are aerosolized (existing in water and soil particles that float in the air and are breathed in).

About NTM Lung Disease

NTM bacteria is common in the environment and can be found in places such as tap water, showerheads, steam from hot tubs and soil from parks and gardens. While everyone will encounter NTM bacteria during their daily lives, not everyone is at risk of developing NTM lung disease.

Most people do not become infected because their lungs are healthy enough to clear the bacteria. But people who have conditions such as bronchiectasis, chronic obstructive pulmonary disease (COPD) and asthma are more likely to develop NTM lung disease, because conditions that cause damage to the lungs make it difficult to clear NTM bacteria.

‘I couldn’t even speak a sentence without coughing, and that’s pretty hard when you’re working as a teacher,’ said Donna. ‘Sometimes, it felt like my cough was holding me prisoner – there are some days where I can’t do certain things. That fear of not being able to catch my breath is stopping me from doing things I used to love to do.’

The symptoms of NTM lung disease, such as cough, fatigue, and shortness of breath, are similar to those of other lung conditions like bronchiectasis, COPD, and asthma. In fact, NTM lung disease is sometimes misdiagnosed, or not diagnosed at all, because many people think their symptoms are due to a lung condition they already have.

Testing for NTM Lung Disease

Coughing up blood prompted Donna to talk to her doctor, and led to various tests to help accurately diagnose her condition.

To properly diagnose, a healthcare specialist may:

* Conduct a physical exam

* Review medical history

* Conduct a sputum culture, where your doctor will ask you to cough up mucus and analyze the mucus for bacteria

* Conduct a chest CT scan to view the potential damage to your lungs

It’s critical to get tested for NTM as soon as possible because NTM lung disease is progressive, and can get worse over time, causing damage to the lungs.

Learn More about NTM Lung Disease

‘I try not to focus on the negative and just focus on the positive – and just keep on peddling,’ said Donna. ‘The only thing worse than having NTM lung disease would be not having my family’s support and love. I was lucky to find a support group of women who are also going through this.’

If you think you or a loved one may have NTM lung disease, talk to your doctor about getting tested. You can also visit for information about NTM lung disease, with additional tools, support and resources, including a discussion guide to help prepare for the next doctor’s appointment.

Sponsored by Insmed Incorporated.


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