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Coughing is one thing -
coughing over and over is another
(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 Phil-
ip’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 diag-
nosed with NTM lung disease
and every day leading up
to the diagnosis was a chal-
lenge - 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 bac- teria that are aerosolized, which means they exist in water particles that float in the air and are breathed in. NTM bacte- ria 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 get- ting 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 symp- toms can get worse, and in some cases, the disease can cause severe, even per- manent 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 addition- al information.
Resources for NTM Patients and Care- givers
Throughout the diagnosis and treatment journey, Fern and Philip met patients from across the country who had similar experiences. Togeth- er, Philip and Fern started
a non-profit organization, NTM Information & Research (NTMir), to save and im- prove lives through research, education, early detection and improved treatments for peo- ple 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 on- line community, for additional support. Resources can also be found at About- NTM.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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