Having a persistent cough wasn’t something new to Debbie. As early as high school, she found herself coughing excessively on the school bus due to the cigarette smoke from her fellow classmates. Over the years, she was prescribed an antibiotic and antihistamine for each new cough, and eventually, it disappeared.
However, Debbie realized that it may be something more, when her cough persisted throughout adulthood, along with other symptoms like chills, fever and fatigue.
After 15 years of searching for answers, countless doctors and testing, Debbie received the correct diagnosis — an overlooked, chronic and progressive lung condition called nontuberculous mycobacterial (NTM) lung disease. Since the symptoms of NTM lung disease are similar to other lung conditions, such as chronic coughing, fatigue and shortness of breath, many people who have it may not even know it for months or sometimes years.
About NTM Lung Disease
NTM lung disease is a serious condition that can cause damage to the lungs, and in the U.S., cases are increasing at approximately 8 percent each year. In 2018, it is estimated that 75,000–105,000 patients were diagnosed with NTM lung disease in the U.S. The condition is caused by bacteria that are common in the environment and are breathed in. NTM bacteria can be found in places such as tap water, showerheads, steam from hot tubs, and soil from parks and gardens. 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.
While everyone comes into contact with NTM bacteria during their daily lives, most people do not develop NTM lung disease because their lungs are healthy enough to clear the bacteria. However, people with a history of lung conditions, like bronchiectasis, chronic obstructive pulmonary disease (COPD) or asthma, are more likely to develop NTM lung disease because the damage from these conditions can make it easier for NTM to infect their lungs.
Over the course of several years, Debbie consulted many physicians about her lingering cough. One incorrectly diagnosed her as being borderline asthmatic, and others could offer no explanation for her symptoms.
“Undergoing tests that all came back without a clear answer was frustrating, to say the least. When I was told nothing was found from my doctors, I thought that maybe there wasn’t something serious causing my symptoms, and eventually my cough would disappear,” said Debbie.
As her cough and other symptoms persisted, Debbie visited her local internal medicine doctor who diagnosed her with pneumonia. However, her X-rays told a different story, so she was referred to a local pulmonologist who conducted a bronchoscopy and shipped the sample out for testing. She was then diagnosed with a type of NTM lung disease known as Mycobacterium avium-intracellulare infection (MAI).
Debbie encourages other at-risk patients to consult their doctor about NTM lung disease if they have an existing lung condition and symptoms that won’t go away. She shares, “If you’re experiencing symptoms, I would suggest that the first step is to recognize the problem and take action for early diagnosis by discussing with your doctor if you should be referred to a specialist and asking if you should be tested for the condition. Being your own advocate and starting these conversations with your doctor may help speed up the time to diagnosis.”
Resources for NTM Lung Disease Patients and Caregivers
Now living with NTM lung disease for almost 19 years, Debbie has found that it’s helpful to connect with others living with the condition and learn about their experiences. This led her to start the New York NTM lung disease support group, using her experience to offer support to those in the early stages of the NTM lung disease journey.
There are also several online patient resources available with information about NTM lung disease, such as the new Voices of NTM Lung Disease eMagazine on AboutNTM.com, which provides information on living with and managing NTM lung disease through first-person stories from different members of the community, like Debbie. On AboutNTM.com, you can also access more information on how to join support groups to connect with others who have NTM lung disease, and how to sign up to receive helpful resources and support.
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