Patients experiencing the symptoms of a chronic condition often feel a sense of relief when their doctor provides a diagnosis. They are no longer left to wonder what's wrong — there's a name for what they're feeling and a path forward to address it.
But not everyone gets this lucky. For patients like Merry, the initial diagnosis can be just the tip of the iceberg.
As a full-time professional, mom and wife in her mid-40s, Merry used to enjoy an active lifestyle until everyday activities, like climbing up a flight of stairs, became increasingly difficult as she experienced shortness of breath.
"It was while walking up a steep hill in a parking lot to pick up my daughter from an after-school activity that I noticed I kept having to stop and catch my breath," Merry recalls.
Merry knew that something was wrong but didn't know what it could be. After numerous appointments and tests, her doctor confirmed that she had a progressive lung disease called chronic obstructive pulmonary disease (COPD). They discussed treatment options, and Merry felt frustrated about needing to manage her symptoms, but ultimately, she adjusted to a new normal.
But even with treatment, her respiratory symptoms persisted.
The link between COPD and NTM lung disease
For Merry, stairs started getting a little harder to climb. Her colds became a little more severe, and her coughing was so bad that she actually cracked a rib. It was confusing and upsetting at times, but she didn't give up. After speaking with her doctor, she underwent tests that identified the other cause of her symptoms: common bacteria called nontuberculous mycobacteria (NTM).
Similar to Merry's story, COPD can lead to damage to the lungs that makes people more susceptible to infection from NTM. While most people do not develop NTM lung disease because their lungs are healthy enough to clear the bacteria, those with a history of lung conditions like COPD, bronchiectasis and asthma are at a higher risk for developing NTM lung disease. In fact, patients with COPD are reportedly 16 times more likely to get NTM lung disease than patients without the chronic condition.
NTM lung disease cases are rising in the U.S., growing 8 percent each year. An estimated 75,000–105,000 patients will be diagnosed with NTM lung disease in the U.S. in 2018. The most common species of NTM lung disease is called Mycobacterium avium complex or MAC, which accounts for more than 80 percent of all cases in the U.S.
The people most at risk for NTM lung disease are those aged 65 and older, a population that is expected to nearly double by 2030. Certain areas in the U.S. also have a higher prevalence of the condition, including Florida, New York, Texas, California, Pennsylvania, Ohio, New Jersey, Georgia, Illinois and Arizona.
Recognizing the symptoms
Patients who have NTM lung disease may not know it for months, or sometimes years, because the symptoms are similar to other lung conditions like COPD, asthma and bronchiectasis. But patients with both COPD and NTM lung disease may experience more flare-ups and difficulty breathing. Symptoms that won't go away or worsen despite treatment is also a sign that it may be NTM lung disease.
"I had never heard of NTM lung disease before I was diagnosed and had no idea that I was at risk because of my COPD. I am very lucky to have a knowledgeable doctor who knew to look for it because I didn't have some of the usual symptoms like a productive cough," said Merry.
Resources and support for patients
Having access to education and support can help patients like Merry. Merry takes a proactive role in managing her treatment by learning more about NTM lung disease from looking for information online. There are also nonprofit organizations that focus on supporting and connecting people with COPD and NTM lung disease, including the COPD Foundation and NTM Info & Research.
If you think you or a loved one may have NTM lung disease, you can talk to a pulmonologist or infectious disease specialist about getting tested and available treatments for NTM lung disease. You can also access a library of tools and information and connect with other patients at BronchiectasisAndNTMInitiative.org. Additional resources, such as a discussion guide to help prepare for the next doctor appointment, real patient stories and information about NTM lung disease, can also be found at AboutNTM.com.
Sponsored by Insmed Incorporated and COPD Foundation.