Imagine having a cough that lasts for months at a time. Now imagine that cough being so severe that it disrupts your daily life — where talking to a loved one on the phone or sitting through a meeting at work becomes virtually impossible. For people living with severe nontuberculous mycobacterial (NTM) lung disease, this is often the reality.
Nontuberculous mycobacterial lung disease is a chronic, debilitating condition that can cause severe, permanent damage to the lungs.[i] While everyone potentially encounters NTM bacteria through routine activities such as taking a shower, washing dishes, or gardening, not everyone is at risk for this rare condition. Those with existing lung conditions such as bronchiectasis, chronic obstructive pulmonary disease (COPD), or asthma[ii] as well as women, individuals aged 65 and older, and people with weakened immune systems face a higher risk of developing NTM lung disease.[iii]
For those living with the condition, normal activities that were once enjoyable, such as hiking, attending a sports game, or having dinner with friends becomes difficult or in some cases unimaginable. One must always factor the disease into their plans — whether it’s considering the altitude in the mountains, the humidity at a baseball game, or maybe even the embarrassment of a continuous cough that interrupts others at a restaurant or movie. Constantly weighing these options can become exhausting, and often results in giving up on attending the activities altogether, which can lead to feelings of loneliness and sadness. For Barbara, who has NTM lung disease, this is all too familiar. “I felt lonely and scared,” said Barbara, recalling moments of missed lunches and church services. “I just didn’t think I could live like that.”
In addition to the toll on one’s mental health, the road to diagnosis can be long and challenging. Part of what makes detecting NTM lung disease difficult is the rarity of the condition and the assumption that symptoms are being caused by an already diagnosed lung condition, like bronchiectasis or COPD. Days can be consumed with countless doctor’s appointments, tests, and treatments — often resulting in a misdiagnosis or no diagnosis at all. For some people it can take years and countless visits to different specialists to get an accurate diagnosis.
Like with any disease, an accurate diagnosis can help to bring answers about how to best manage the condition through diet and exercise, treatments, and understanding of triggers. Although NTM lung disease is rare, identifying it can bring a sense of relief and empower people to move forward in managing their disease with an appropriate treatment plan. “It was a relief to know what it was,” said Barbara, who saw 17 doctors over a two-year span before receiving her diagnosis. “Even if we couldn’t cure this thing, [my doctor] was going to walk me through it.”
It is important for those living with NTM lung disease to maintain a healthy lifestyle through diet and exercise and limit exposure to NTM bacteria to help manage the condition. Shortening showers to reduce exposure, doing light physical activity such as walking, and eating foods that help minimize inflammation are some examples of changes that can impact life with the disease. “Once I was diagnosed, I incorporated some important modifications into my daily routine such as avoiding eating and drinking after 6pm, sleeping at an elevated angle of about 45 degrees, exercising daily and removing all carpeting and drapes in the house to eliminate the gathering of dust. Together, these and other changes have significantly helped improve my symptoms,” said Barbara.
Nontuberculous mycobacterial lung disease can feel isolating and burdensome. Knowing that there are others living with the same condition and who share similar challenges can provide insight into tips for managing the disease. Visit AboutNTM.com for stories and suggestions from patients, caregivers, physicians, and advocacy groups about living with NTM lung disease.
[i] Park HY, Jeong B-H, Chon HR, Jeon K, Daley CL, Koh W-J. Lung function decline according to clinical course in nontuberculous mycobacterial lung disease. Chest. 2016;150(6):1223.
[ii] Andréjak C, Nielsen R, Thomsen VØ, et al. Chronic respiratory disease, inhaled corticosteroids and risk of non-tuberculous mycobacteriosis. Thorax. 2013;68:256-262.
[iii] Adjemian J, Olivier KN, Seitz AE, Holland SM, Prevots DR. Prevalence of nontuberculous mycobacterial lung disease in U.S. Medicare beneficiaries. Am J Respir Crit Care Med. 2012;185(8):881–886. doi:10.1164/rccm.201111-2016OC