(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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