How to Recognize the Signs of an Underdiagnosed Lung Condition

Updated on May 30, 2018

Screen Shot 2018 05 30 at 7.37.17 PMBy Paul Streck, M.D.

Although the number of people diagnosed with nontuberculous mycobacterial (NTM) lung disease grows every year, particularly among those 65 years and older, many people who have this disease may not know it. That’s because the symptoms of NTM lung disease are very similar to the symptoms of other lung conditions, like bronchiectasis, chronic obstructive pulmonary disorder (COPD) and asthma. So similar, in fact, that diagnosis of NTM lung disease is often delayed, and people can have the condition for months, even years, without knowing it.

People can develop NTM lung disease by breathing the bacteria in. NTM bacteria can be found in tap water, showerheads, steam from tubs and soil from parks, gardens and the environment. Everyone comes in contact with the bacteria in their daily lives, but not everyone will get NTM lung disease. Most people do not become infected because their lungs are healthy and can clear the NTM bacteria.

However, those who have existing lung conditions are at greater risk for the disease. The damage from these conditions can make it difficult to clear NTM bacteria from their airways. Over time, symptoms can get worse, and in some cases the disease can cause severe, even permanent damage to the lungs.

Here are a few common questions, and their answers, about NTM lung disease:

What are the symptoms of NTM lung disease?

Those with NTM lung disease may experience one or more of these symptoms, that will not go away or worsen over time:

  • Chronic coughing, including coughing fits
  • Coughing up phlegm
  • Trouble breathing/shortness of breath
  • Feeling tired often
  • Weight loss and/or lack of appetite
  • Low-grade fever
  • Recurring lung infections

Diagnosis of NTM lung disease is sometimes delayed (in some cases for months or even years) because the symptoms are similar to other lung conditions. In fact, a majority of patients have moderate to severe NTM lung disease at diagnosis.

Who is at a greater risk of contracting NTM lung disease?

Those with a history of lung conditions, like chronic obstructive pulmonary disease (COPD), bronchiectasis and asthma, are at a greater risk of developing the disease. These types of conditions can cause damage to the lungs, making them more vulnerable to infection.

Additionally, it is more common in women than men, and while the people most at risk for NTM lung disease are 65 years or older, there are some reported cases of people as young as 45 years old. Those with weakened immune systems are also at greater risk.

Where is NTM lung disease commonly found?

NTM lung disease occurs throughout the U.S., however some areas have higher rates of the disease: Florida, Texas, California, Pennsylvania, Ohio, New Jersey, Georgia, Illinois and Arizona. Seven out of 10 of all NTM infections in the U.S. occur along a coastal area.

What should I do if I think I have symptoms of NTM lung disease?

Talk to a doctor or a lung specialist about your symptoms and any lung conditions you or a loved one have. It is important to get tested for NTM lung disease since the disease is progressive. This means that it could get worse over time, causing more damage to your lungs. Symptoms can get worse too.

To test for NTM lung disease, a pulmonologist or an infectious disease specialist may perform a physical exam, review your medical history, collect a sputum culture and do a chest CT scan or radiograph to help determine if you have NTM lung disease.

Getting tested is the first step to being properly diagnosed – the sooner you receive a diagnosis, the sooner your doctor can determine next steps and begin to evaluate potential treatment options with you.

How can I learn more about NTM lung disease?

Visit for more information on NTM lung disease and additional resources, including a doctor discussion guide to inform your next appointment.

Paul Streck, M.D., is the Chief Medical Officer of Insmed Incorporated, a global biopharmaceutical company focused on the unmet needs of patients with rare diseases. Dr. Streck brings over 25 years of clinical development, management and leadership expertise.


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