NTM (nontuberculous mycobacterial lung disease) is still considered rare, but cases are growing 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. Since awareness of NTM lung disease is limited and the symptoms of NTM lung disease, like chronic coughing, feeling tired often and shortness of breath, are similar to other lung conditions, many people who have it may not even know it for months or sometimes years.
(BPT) - Having a friend or loved one with a chronic and progressive condition teaches you many things: patience, understanding and adapting to lifestyle changes after diagnosis. But for Mary, supporting her friend, Barbara, living with a serious lung condition called nontuberculous mycobacterial (NTM) lung disease taught her the importance of listening.
While taking weekly walks together, Mary first noticed Barbara was experiencing respiratory symptoms, such as coughing fits and getting tired very easily. Barbara’s symptoms continued for two years, and Mary later found out that Barbara was living with NTM lung disease — a serious and progressive condition caused by bacteria that can lead to lung damage and respiratory symptoms.
From speaking with Barbara, she realized that while Barbara was relieved to have an explanation for her symptoms, she also felt overwhelmed and scared by her new diagnosis.
Mary recalls, “As her friend, I was upset that she had to face this health issue and wanted to know how I could help. I realized the best way I could show Barbara my support was to ‘walk with her’ and let her know she wasn’t alone.”
About NTM Lung Disease
NTM bacteria are common in the environment and can be found in tap water, showerheads, steam from hot tubs, and soil from parks and gardens. 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.
NTM lung disease is considered rare, but cases are growing 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. Since awareness of NTM lung disease is limited and the symptoms of NTM lung disease, like chronic coughing, feeling tired often and shortness of breath, are similar to other lung conditions, many people who have it may not even know it for months or sometimes years.
Providing Encouragement and Understanding
Following an NTM lung disease diagnosis, patients may have a hard time coping with the impact the disease can have on their lifestyle. Emotional support from family and friends is crucial to help patients navigate these new challenges.
After learning about Barbara’s diagnosis, Mary encouraged her to speak about the tests she was undergoing and treatment she was taking as well as how she was feeling. Mary was also there to support Barbara through some of the lifestyle changes that she was making to help manage her condition — whether it was hearing about the adjustments she made when traveling or ways to help limit her exposure to NTM bacteria at home.
Mary also understood that keeping up weekly walks helped Barbara physically and emotionally. She made sure that they stuck to their routine and made adjustments whenever necessary, such as walking for shorter distances or slowing down their pace based on how Barbara was feeling.
“Barbara’s diagnosis made our friendship stronger because she knew she could confide in me and receive the support and reassurance she needed — even if that just meant listening,” Mary shares. “While everyone’s experience with NTM lung disease is different, sometimes knowing there is someone willing to listen to what you’re going through can make a world of difference.”
Like many other loved ones of NTM lung disease patients, Mary had never heard about the condition before Barbara’s diagnosis. She let Barbara be her teacher and learned a lot about the condition through her experience. Today, she’s more informed about NTM lung disease and can be a better source of guidance and support for Barbara.
There are also several online patient resources available to learn more about NTM lung disease, such as the 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 Barbara and Mary. 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.
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(BPT) - When Fern started coughing over and over again, she was repeatedly diagnosed with bronchitis and recurring pneumonia. However, both Fern and her husband Philip knew that something wasn’t quite right. Fern and Philip’s persistence led to Fern’s diagnosis of nontuberculous mycobacterial (NTM) lung disease, a progressive and chronic condition caused by bacteria that are common in the environment.
“It took over six years for Fern to be accurately diagnosed with NTM lung disease and every day leading up to the diagnosis was a challenge — from doctors telling us no treatment was needed to the day-to-day reality of respiratory therapies,” said Fern’s husband, Philip. “But the biggest challenge by far was not being able to definitively state what she had and not knowing what plan of action to pursue.”
About NTM Lung Disease
Nontuberculous mycobacterial lung disease is an infection caused by bacteria that are aerosolized, which means they exist in water particles that float in the air and are breathed in. NTM bacteria is common in the environment and can be found places such as tap water, showerheads, steam from hot tubs, mist and soil from parks and gardens. In fact, one study across 25 states showed that
NTM bacteria was found in nearly eight out of ten water samples.
Everyone comes into contact with NTM bacteria during their daily lives. However, not everyone is at risk of getting 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.
Since the symptoms of NTM lung disease, such as cough, fatigue and shortness of breath, are similar to those of other lung conditions, many people who have it may not even know it for months or sometimes years. NTM lung disease is sometimes misdiagnosed or not diagnosed at all because many people with symptoms think it’s due to a lung condition they already have.
Talk to a Doctor about NTM Lung Disease
Over time, NTM lung disease symptoms can get worse, and in some cases, the disease can cause severe, even permanent damage to the lungs, so early detection and management is crucial. If you think you or a loved one may have NTM lung disease, talk to your doctor about getting tested and visit AboutNTM.com for additional information.
Resources for NTM Patients and Caregivers
Throughout the diagnosis and treatment journey, Fern and Philip met patients from across the country who had similar experiences. Together, Philip and Fern started a non-profit organization, NTM Information & Research (NTMir), to save and improve lives through research, education, early detection and improved treatments for people with NTM lung disease. Over the past ten years the organization has grown to be a significant resource for patients with NTM lung disease and their caregivers as well as clinicians who treat the condition.
“When Fern was first diagnosed, information about NTM lung disease was scarce and we knew the best way to arm ourselves was to find out as much about NTM as possible,” Philip said. “Learning more about the disease, starting conversations with doctors, getting support from those around you and others with the same condition — those are all imperative to patients and caregivers alike.”
NTMinfo.org provides a library of tools and information, as well as an online community, for additional support. Resources can also be found at AboutNTM.com, such as a discussion guide to help prepare for the next doctor appointment, real patient stories and information about NTM lung disease.
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