Coughing, Fatigue, Shortness of Breath—If You Have These Symptoms Over

Home , Cough, Shortness of breath, Sputum, Wheeze

Key Facts About NTM Lung Disease 1 of 5

Coughing, fatigue, shortness of breath—if you have these symptoms over and over and already suffer from a lung condition, like bronchiectasis, COPD, or asthma, it could be a sign of a lung disease called NTM.

WHAT IS HOW NTM AFFECTS NTM LUNG DISEASE? YOU AND YOUR LUNGS

Nontuberculous mycobacterial (NTM) NTM can make you sick and cause lung disease is an infection caused by you to experience symptoms like bacteria that are breathed in through coughing, fatigue, and shortness of the nose and mouth. breath. Over time, your symptoms can worsen, because NTM lung NTM bacteria are common in disease is progressive. That the environment. They can be means the infection gets worse found in places such as tap water, over time and can result in severe, showerheads, steam from hot tubs, permanent lung damage. and soil from parks and gardens. The most common species of Since symptoms of NTM lung NTM in the US is Mycobacterium disease are similar to other lung avium complex (MAC). conditions, people can have NTM for years without knowing it. NTM lung disease typically develops in people with preexisting lung conditions. Some of those lung conditions are bronchiectasis, COPD, and asthma. AboutNTM.com/More Key Facts About NTM Lung Disease 2 of 5

YOUR LUNG CONDITION WHO ELSE IS PUTS YOU AT RISK AT RISK?

Everyone comes into contact with NTM bacteria during their daily lives. However, not everyone is at risk of getting NTM lung disease. Most people 65+ do not become infected because their OLDER lungs are healthy enough to clear NTM bacteria. NTM lung disease is more common in People with a history of lung women than in men. People aged 65 conditions, like bronchiectasis, COPD, and older, a population that is expected or asthma, are more likely to develop to nearly double by 2030, are at an infection. You can also get infected an increased risk. However, people if you have had severe or chronic as young as 45 years could also get pneumonia. infected. That’s because the damage from these People who have weakened immune conditions can make it easier for NTM systems can also develop NTM to infect your lungs, and more difficult infections, including those taking to get rid of NTM. This puts people medications which affect immune with lung conditions at a higher risk for response. NTM lung disease.

DID YOU KNOW?

50% of people with bronchiectasis may have active 50%% NTM lung disease16x

People with Some areas of the US have higher rates COPD are almost of NTM lung disease. In fact, 7 out of 10 16 times more cases occur along a coastal area. 50% 16×x likely to get NTM

NTM is NOT considered contagious

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RECOGNIZING THE SYMPTOMS

The symptoms of NTM lung disease Feeling Tired Often are so similar to other lung conditions Being exhausted, making it hard to that NTM is sometimes misdiagnosed or do daily activities not diagnosed at all. Many people who have symptoms think Trouble Breathing/ they’re due to the lung condition they Shortness of Breath already have. For example, if you have When everyday activities, like bronchiectasis, you may be coughing a walking your dog or climbing lot. But that cough may not just be from stairs, leave you short of breath, bronchiectasis. It could also be from NTM. with a wheeze, or with tightness in your chest So how can you tell if it’s NTM and not just your current lung condition acting up? Weight Loss and/or Well, the truth is, it’s very difficult. But, Lack of Appetite there are tests your doctor can use to Sudden, unexplained weight loss and/or when you don’t feel see if it’s NTM. like eating

WHAT ARE THE Fever A slight fever that may also include KEY SYMPTOMS? night sweats and chills

If you have NTM lung disease, you may experience one or several of these signs Recurring Infection and symptoms: If you keep getting a lung infection or pneumonia

Coughing Symptoms Don’t Get Better It may be a chronic cough that you can’t get rid of like a “coughing fit,” or with Medicine a cough that comes and goes. You You may have taken medications may have a cough that is dry, brings for other lung conditions over a long up mucus, keeps you up at night, or period of time. But despite taking brings up blood. If you are coughing medicine, you keep getting sick up blood, call or visit your doctor right away

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out 2 of 3 HAVE MODERATE TO SEVERE LUNG DESIASE

Key Facts About NTM Lung Disease 4 of 5 out 2 of 3 HAVE MODERATE GETTING WHAT IF YOU’RE out of TO SEVERE LUNG DESIASE TESTED 2 3 DIAGNOSED? HAVE MODERATE TO SEVERE LUNG DESIASE It’s important to get tested for NTM as You and your doctor will decide which out of soon as possible because NTM lung treatment option is right for you. LUNG DESIASE disease is progressive. This means that You may be prescribed a treatment HAVE MODERATE it gets worse over time, causing more regimen or you may be referred to a TO SEVERE damage to your lungs. Your symptoms specialist who has more experience can get worse too. out of treating people with NTM. HAVE MODERATE Since the symptomsTO ofSEVERE NTM lung LUNG DESIASE disease are similar to other lung conditions, diagnosis can be delayed. Many people who have it may not know

it for months or sometimesHAVE MODERATE years. In fact, 2 out of 3 people TOwith SEVERENTM have moderateout to ofsevere lungLUNG disease DISEASE by out of the time they’re finally diagnosed. 2 3 If you do start treatment, sticking to HAVE MODERATE TO SEVERE your treatment regimen is extremely LUNG DESIASE important. That’s because when you HAVE MODERATE stay on treatment, there is a greater TO SEVERE chance you could get rid of NTM. out of LUNG DISEASE

To help determine if you have NTM lung disease, your doctor may: • Perform a physical exam • Review your medical history • Collect a sputum culture, which involves you coughing up mucus for your doctor to analyze • Do a chest CT scan or X-ray, where a specialized machine takes a picture of your body that shows any damage in your lungs

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TALK TO SUPPORT AND YOUR DOCTOR RESOURCES

If you think you may have NTM Valuable tools that can help you lung disease, there is something throughout your journey you can do. Talk to your doctor or a specialist, like a Pulmonologist Join AboutNTM Support or Infectious Disease Specialist – If you think you could have NTM someone who has experience treating lung disease or have already been people with NTM. Ask if getting diagnosed, sign up for the AboutNTM tested for NTM may be right for you. Support program. There, you will The Doctor Discussion Guide on receive helpful information, support, and AboutNTM.com can help you figure resources to help you along the way. out the right questions to ask. Watch real NTM stories You are not alone. People with NTM have shared their stories in hopes For more info, visit of spreading more awareness of this rare disease. Get to know Betsy, AboutNTM.com Donna, and Jim and learn from their experiences. Connect with people living with NTM You might have a lot of questions, but there are NTM communities for people to support one another. • NTM Info & Research support groups ntminfo.org • Bronch and NTM 360 Social online community bronchiectasisandntminitiative.org