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Why is Rare Disease Day Important?

Posted on February 27, 2023   |   
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This blog post was authored by Katie Keating, RN, MS, and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee.

Rare Disease Day is a global awareness day to raise knowledge of rare diseases. It helps to promote a better quality of life for the 300 million people with a rare disease worldwide. More than 7,000 rare diseases exist, and 72 percent of those are genetic. A disease is considered “rare” when it affects fewer than 1 in 2,000 people. This year, Rare Disease Daywill be celebrated on February 28th.1

Rare Disease Day began in 2008. It is organized by EURORDIS and more than 65 national patient organizations.2 EURORDIS (or Rare Diseases Europe) is a group of nonprofit partner organizations that works together to improve the lives of people living with rare diseases. EURORDIS is a patient-led, international organization. It includes those with rare diseases and their families, caregivers, healthcare professionals, researchers, policymakers, industry representatives, and the general public. Organizations from North America joined the effort in 2009, followed by the rest of the world in 2010. The long-term goal of Rare Disease Day is to make sure that everyone with a rare disease gets access to diagnosis, treatment, and care.

NTM lung disease is a rare disease. People with NTM are misdiagnosed frequently. Because the symptoms of NTM lung disease and COPD are similar, most people go through a maze of specialists before they are accurately diagnosed. As you might have noticed, many people in our daily lives have never heard of NTM lung disease. Sometimes, it can be hard to find a physician that feels confident treating it.

Rare Disease Day gives people throughout the world a chance to raise awareness of rare diseases. For many, this is the one day in the year when they feel a spotlight is shown on conditions that are not as common as others. Requests for action can be at local, national, and even international levels.

It can be difficult living with a rare disease and often lonely because many people have never heard of your condition. It can be difficult at times to find support and education on how to manage your condition effectively. Also, people with rare, invisible disorders may be frequently misunderstood by others. Increased awareness may allow more people to better understand these conditions, leading to greater support for individuals with rare, invisible diseases.

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Categories: Awareness

Is Alpha-1 Related to Your Bronchiectasis?

Posted on February 22, 2023   |   
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This blog post was authored by Katie Keating, RN, MS, and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee.

Alpha-1 antitrypsin deficiency disease (also termed alpha-1) is a rare disorder that is often mentioned at patient conferences for bronchiectasis/nontuberculous mycobacteria lung disease (NTM) patients. However, this condition is not understood by many patients. An estimated 100,000 people are affected by alpha-1 within the United States. Alpha-1 can be linked to bronchiectasis.1 It is important, therefore, to occasionally consider ruling out this condition when a person notes ongoing respiratory issues.

Bronchiectasis results in swelling of the airways and an increased chance to develop repeat or chronic respiratory infections.2 The most common diseases associated with bronchiectasis are COPD, acute bronchitis, post-inflammatory fibrosis, and genetic disorders including alpha-1.3

Alpha-1 occurs when there is a lack of a protein in the blood known as alpha-1 antitrypsin (AAT). This protein is produced by the liver. In this condition, the liver cannot secrete this protein at the normal rate, and it collects in the liver resulting in less AAT in the blood. An increase in this protein in the liver can cause liver disease, and a decrease in this protein in the blood can lead to lung disease. The function of AAT in the blood is to protect the lungs from damage to the airways and air sacs caused by infection and other damaging irritants such as cigarette smoke, respectively.4

How alpha-1 impacts the lungs:

  • Breathlessness
  • Wheezing
  • Cough (with or without sputum production)
  • Frequent flare-ups (exacerbations)

Alpha-1 affects the liver as well. Frequent symptoms include the skin having a yellowish appearance (jaundice), the belly appearing swollen, and vomiting or passing of blood.4

Who should be tested?

  • All patients diagnosed with chronic bronchitis, bronchiectasis, NTM, COPD, or emphysema
  • Individuals with unexplained liver disease
  • Individuals with a family history of COPD or liver disease
  • People with granulomatosis with polyangiitis (GPA). GPA is a disorder that causes inflammation of the blood vessels in the nose, sinuses, throat, lungs, and kidneys.6
  • Necrotizing panniculitis (inflammation in fat beneath the skin) that causes the skin to harden and form painful red lumps and patches.6

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Categories: Awareness

NTM Treatment: Taking the “Big 3”

Posted on February 06, 2023   |   
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This blog post was authored by Katie Keating, RN, MS, and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee.

Treatment for NTM lung disease can be overwhelming for patients, their families, and caregivers. Good communication across the health care team is important for those needing NTM treatment.

Management and treatment of NTM lung infections usually include multiple specialists to help deliver the best quality of care. The health care teams for those who have NTM lung disease may include pulmonologists (lung doctors), infectious disease specialists (someone who specializes in the treatment of infections), primary care physicians, nurses, respiratory therapists, pharmacists, surgeons, dietitians/nutritionists, and mental health care providers.

Before someone with NTM lung disease starts a treatment plan involving medication, they should talk to their health care teams about the following topics.

  • How long they will be taking the medicines
  • How will they know if the medicines are working
  • Follow-up appointments
  • Any possible side effects
  • How will questions and side effects be handled if they arise

Talking about what to expect in the months ahead may help people taking medicines for NTM lung disease stay on their treatment plan. Worry and anxiety often related to taking medicines for a long period may decrease once a person understands the treatment plan ahead.

The goals of the treatment of NTM lung disease vary between patients but may include improvement in symptoms, stabilization of abnormal CT scan or chest x-ray results, and/or improvement in sputum culture results. In 2020, experts in the field of NTM lung disease developed guidelines for treating the most common NTM infections, including Mycobacterium Avium Complex (also known as MAC) and Mycobacterium abscessus. Instead of treating the NTM with one medicine, experts recommend taking 3-4 antibiotics for the treatment of NTMLD.1 Based on the type of NTM someone has (e.g. MAC lung disease) their health care provider may recommend the following medicines clarithromycin or azithromycin, rifampin or rifabutin and ethambutol, and possibly streptomycin or amikacin. The treatment guidelines advise that those taking these medicines should stay on them for 12 months after sputum cultures are clear of NTM germs being treated.

Your health care team may suggest that you begin taking the medicines slowly. This may mean that you start the first medicine, then begin the second and third medications one week later. This staggered start will often help those taking the medicines decide whether they are tolerating the treatment.2

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Categories: Support

Tips for Those Newly Diagnosed Bronchiectasis and NTM lung Disease

Posted on January 25, 2023   |   
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This blog post was authored by Katie Keating, RN, MS, and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee.

Getting a diagnosis of bronchiectasis and/or nontuberculous mycobacterial (NTM) lung disease can seem overwhelming, to say the very least. It is important to understand the path ahead for you as an individual with a rare disease.

Communication with your health care provider

Communicating with your doctor about the details of your treatment plan is the key to the best care possible.

Before Your Appointment, prepare a list of questions you have for your doctor. Plan for a family member or a friend to attend the visit with you, if possible

During Your Appointment —Inform your doctor of whether you understand the course of treatment that he/she is suggesting. Be open with your major concerns. Understanding and sticking to your treatment plan can help you manage your condition and may result in better outcomes.

Questions to Ask Your Doctor:

  • What medicines will I be taking and for how long?
  • What side effects are common for each of these medicines?
  • What over-the-counter medicines may help me manage symptoms as well?
  • What treatment options are available to me (including airway-clearance devices that may help to break up the sputum and nebulizers that deliver inhaled medications that may assist with symptoms)?
  • What precautions should I take? What infection-control practices? Home modifications? Lifestyle changes?
  • How often should I schedule office visits and do repeat testing?
  • What are some side effects that I should report immediately?
  • How can I access my medical record? Ask for and keep copies of all your lab work and test results.

Medications and Treatment

Take all medicines as prescribed by your doctor. Ask your pharmacist if you have any specific questions about each medicine. Keep an updated list of the medicines that you and keep it with you at all times

Begin a routine airway clearance practice. Get assistance from your doctor or a respiratory therapist to find the best techniques and/or devices that will help to clear mucus and prevent it from pooling in the airways. Report flare-ups, changes in sputum production, increased shortness of breath, fatigue, fevers, and night sweats to your doctor.

Nutrition and exercise

Proper nutrition and maintaining your weight are necessary for overall wellness. Eating a healthy diet with nutritious foods will help you to feel your best and have the energy you need. Exercise when you feel up to it. A small amount of exercise is better than no exercise. Movement is so much better for our lungs, bodies, and minds than staying sedentary.

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Categories: Support

MAC2v3 study update – December 2022

Posted on January 06, 2023   |   
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This blog post was authored by Emily Henkle, PhD, MPH, and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee.

Hello NTM community!

The MAC2v3 clinical trial led by Dr. Kevin Winthrop and team at Oregon Health & Science University is beginning its 5th year. This study is important to the NTM lung disease community as it is designed to test whether two drugs (azithromycin and ethambutol) are as helpful in treating MAC (a common type of NTM) as the “big three” (azithromycin, ethambutol, and rifampin) in producing a negative sputum culture. The researchers are also studying whether two drugs are easier to tolerate than three.

As of today, the study has enrolled over 300 participants, but are wishing to increase that amount to reach a target of 500. Therefore, there are plenty of openings for new participants. Now that most people with NTM lung disease are feeling more confident following the pandemic and returning to doctor’s appointments in person, we are hoping to quickly recruit more patients with MAC interested in participating.

We are pleased to share that our funder, the Patient-Centered Outcomes Research Institute or PCORI has extended the project for two more years. However, the MAC2v3 study does not have any analysis planned until all the data is in, so we need to finish enrollment before we can look at the results.

We have gained some great insight on how symptoms of MAC change in the first 6 months as we have continued to enroll new participants in the study. This information was presented at the American Thoracic Society (ATS) annual meeting in May 2021 and May 2022. We observed significant improvements in overall self-reported Respiratory Symptoms and Health Perception scores. Patients reported a wide range of symptoms at study start. As expected, the most common self-reported treatment side effects were GI-related, occurring in about half of study participants. In addition, we continue to meet with our study advisory committee and data monitoring committee regularly. These committees provide guidance and ensure that all aspects of the study remain safe.

As we began this study in the midst of the COVID pandemic, we adjusted how those interested in the study could be referred. Patients can be referred virtually for this study without the need to travel to OHSU or local sites. There is no additional requirement other than reaching out to study coordinators. Those interested candidates as well as those accepted can remain with their preferred (treating) physician while getting the benefit of guidance from NTM experts.

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Categories: Research

Tips for the Holidays for individuals with bronchiectasis and NTM lung disease

Posted on December 05, 2022   |   
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This blog post was authored by Katie Keating, RN, MS, and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee.

The holidays are quickly approaching. We have gotten through an extremely challenging pandemic. However, many people with lung conditions are also worried about RSV Respiratory syncytial virus (RSV) and the flu. Are you prepared to enjoy the holidays despite concerns about how your lung disease may impact your time with family and friends?

Below are a few tips that I have learned over the years on how best to enjoy the holiday season when you have bronchiectasis and/or nontuberculous mycobacteria (NTM) lung disease.

Ask about the health of guests

During the upcoming holiday season, we must protect ourselves. It is important to inquire about the health status of all who will be attending a holiday get-together the day before and/or the day of the event. If a child or adult has mild respiratory symptoms, it's OK to be assertive and say "no." It is best to reschedule another time to get together with these individuals. Put yourself first and make the right decision; it is being smart, not selfish. Many people may not think about or realize that their mild symptoms can lead to major symptoms in a person with a lung condition.

Also, realize that people can be carriers and not know if they are sick. It is up to us whether or not to take risks in all situations. It is important to continue practicing the basic infection-control measures (e.g., hand washing, mask-wearing) reviewed throughout the pandemic. These viruses will be around for quite some time. People need people. Our mental health is so important for our physical health.

Think about food and drink alternatives

After doing your family/friend assessment, enjoy the day. It is great to be around family, friends, and little children who light up your day. Regarding holiday dining, check out possible food interactions if you are on antibiotics. For example, you may need to avoid dairy foods within a few hours of taking antibiotics. Think about drink preparation in advance. I drank O'Doul's nonalcoholic beer and alcohol-free Fres wine while I was on the "big three" antibiotics. I would have preferred to indulge in a good glass of vino during the holidays, but the alcohol/drug interactions were too risky.

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Categories: Support

Facing The Challenges of NTM Lung Disease

Posted on November 29, 2022   |   
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This blog post was authored by Christina Hunt, BS, RRT.

Nontuberculous mycobacterial (NTM) lung disease is caused by common bacteria found in soil, freshwater, and natural water sources.1 You may not have heard of it because NTM lung disease is described as a rare disease. People who have NTM lung disease may have a cough (often bringing up mucus), fever, weight loss, tiredness, and sometimes bloody sputum (mucus).2 Often, NTM lung disease is found in people with weakened immune systems or who already have a lung disease like COPD, bronchiectasis, or a history of treated tuberculosis.2

If a doctor suspects NTM lung disease, they will first perform some tests to find out the type and how serious your infection could be. These include sputum testing, and a special x-ray called a CT scan. NTM lung disease is often slow to worsen. If NTM lung disease is diagnosed, the health care team will be careful to come up with a plan of care that will keep in mind the NTM’s ability to cause lung damage, risks and benefits of therapy, the person’s willingness to begin medicines for treatment, and the overall goals for therapy. Sometimes, “watchful waiting” may be chosen as the course of action.3 If symptoms or the NTM lung disease gets worse and starts to damage the lung, the care plan may be changed. Regardless of when treatment begins, health care teams will advise that those with NTM lung disease start a routine to help clear their mucus. This is called “airway clearance” and is an important part of treating NTM lung disease.4

Along with medicines, the care plan for NTM lung disease should include a wellness program. This can involve starting an exercise program, eating healthy, and avoiding losing weight.4 If the person with NTM lung disease has another lung condition (e.g., COPD, bronchiectasis, rheumatoid arthritis), they should take care of those conditions as well.1 Additionally, around a quarter (26%) of those with NTM lung disease also have acid reflux.5 Health care providers will often test for reflux disease and provide “lifestyle change” ideas to help reduce reflux and aspiration, a condition when food or fluids that should go into the stomach go into the lungs instead.5

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Categories: Awareness

The Home Sputum Collection Project

Posted on November 02, 2022   |   
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This article was reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee.

By Helen Ballard and John Torrence

Patients have reported that they often receive inconclusive or nonspecific results from NTM sputum tests, which can be incredibly frustrating.

Unfortunately, many laboratories do not possess the special testing equipment necessary to identify NTM subspecies. Far too often, we hear about patients’ “sputum chronicles”, where samples may be sent to various labs across the country, only for the patient to receive vague, sub-par test results in return. This inefficient process involving repeated, multi-laboratory sputum testing often creates diagnosis and treatment delays, generating unnecessary distress and frustration for patients and prescribers alike.

To combat these issues, the COPD Foundation has recently embarked on a pilot project with the goal of helping NTM patients receive more timely and accurate results on their sputum tests, free of cost!

With generous funding from Insmed, we partnered with NTMir and the full-service mycobacteriology lab at National Jewish Health to expand access to at-home sputum collection at no cost to the patient.

Through our website, physicians can sign up to participate and patients can access a variety of resources including FAQs, our Bronchiectasis and NTM info line, and a 3-D sputum collection instructional video.

Registration is simple!

  1. Let your doctor know you are interested in this program.
  2. The interested physician or prescriber completes a short online form located at
  3. The prescriber receives an email from containing a sputum kit order form.
  4. The prescriber completes the order form on behalf of their patient(s) and returns the completed form via email to National Jewish Health.
  5. The mycobacteriology lab at National Jewish Health sends a sputum collection kit directly to the patient.
  6. The patient follows the collection instructions and returns their specimen to the full-service mycobacteriology lab at National Jewish Health, where tests ordered by the prescriber are performed.
  7. Results are returned via email to the prescribing physician’s office.

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Categories: Research

How the “Teach Back” Method May Improve Education for Those with Chronic Lung Conditions

Posted on August 22, 2022   |   
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This blog post was authored by Katie Keating, RN, MS, and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee.

Understanding and managing your health care plan as a person with bronchiectasis and/or NTM lung disease can be very challenging. In my experience, I have found that those that leave the hospital after a stay can be confused about the instructions they have been given. Often, patients do not recognize that they did not understand the instructions when they received them. As a result, a large amount of health care information is forgotten immediately after leaving a doctor’s appointment or being discharged from the hospital.

Health literacy is the “ability to find, process, and understand basic health information and services needed to make appropriate health care decisions.”1 When people with lung conditions do not understand the health information they have been given, it can lead to an increased burden of your lung condition, worsening outcomes, and increased health system use and costs.1

Health literacy is an important goal of patient education. It can be defined as having the skills and understanding to apply information to make valuable decisions about your health and healthcare.

How health care teams give information to those with lung conditions, like bronchiectasis and NTM lung disease, can make a big difference in how much someone understands their diagnosis.It may also help someone who has a lung condition manage it better. “Teach-back” can be a wonderful patient education tool to help patients understand information about their health. It can help those with health conditions become involved in their care and may lead to better quality and safer care.1

Good communication between health care practitioners (HCPs) and patients is important for safe, quality care. There is a high cost to misunderstanding. The cost of a lack of education and patient misunderstanding of medical information is estimated at $73 billion a year.2 This means that many people leave doctors’ offices without fully understanding their diagnosis and the necessary treatments to lessen their symptoms.

Crowded areas in health care facilities, noise, and lack of privacy are often barriers to effective learning. Interruptions, lack of time, and poor HCP teaching skills may contribute to a patient’s difficulty understanding health information.2

A possible solution

“Teach-back” helps HCPs test whether their teaching methods are working by allowing them to find out whether their patients understand. Open-ended questions enable the health care professional to see whether a person understands what she/ he has just been taught.

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Categories: Awareness

Research Opportunity for People with Non-CF Bronchiectasis

Posted on June 15, 2022   |   
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This article was reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee.

Non-cystic fibrosis bronchiectasis (NCFBE) is a chronic lung disease that affects the lungs by causing widening, irritation, and scarring of the airways due to increased mucus production. Mucus tends to pool in the airways because the cilia (tiny hair-like structures that help to sweep mucus out the lungs) do not function well. This causes NCFBE patients to have repeated lung infections.1 Bronchiectasis can be diagnosed using a CT scan of the chest although further testing like PFT (pulmonary function tests) and bloodwork may be requested by your health care team.1

The goals of treating NCFBE are to reduce exacerbations (flare-ups), maintain lung function, and improve a person’s quality of life.1 This may be done by stressing the importance of airway clearing methods, healthy eating, exercise, and avoiding illness. Those with bronchiectasis may be referred to a pulmonary rehab (rehabilitation) center to get advice and education on clearing the airways of mucus and to help create an exercise routine that will be beneficial.2

Researchers are currently studying a drug that may have an effect on lung inflammation, breathlessness, and pulmonary exacerbations due to NCFBE:

ASPEN is a clinical study for NCFBE patients being conducted by Insmed Incorporated. The results of this study will help researchers gain a better understanding of an oral study drug that is being evaluated for its effects on flare-ups and other NCFBE symptoms.

To participate in this study to must meet the following criteria:

  • Be between 12 and 85 years of age
  • Be a non-smoker
  • Have a clinical history consistent with non-cystic fibrosis bronchiectasis
  • Have had at least 2 pulmonary exacerbations in the last 12 months (Adolescent participants are required to have had at least 1 pulmonary exacerbation in the prior 12 months.)
  • Have no history of COPD or Asthma
  • Cannot be on active treatment for nontuberculous mycobacterial (NTM) lung infection, allergic bronchopulmonary aspergillosis (ABPA), or tuberculosis (TB)

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Categories: Research

Summer Precautions for People with Bronchiectasis and NTM Lung Disease

Posted on June 13, 2022   |   
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This blog post was authored by Katie Keating, RN, MS, and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee.

Summer fun and great outdoor weather are approaching. Sunshine is uplifting to most of us after being indoors through a long and challenging winter. By taking specific precautions throughout the summer, you may lessen your chance of getting an NTM infection or experiencing a flare-up. Educating yourself on these suggestions may enable you to truly enjoy your summer and avoid infection.

Below are some excerpts that are taken from the paper Reducing Exposure to Nontuberculous Mycobacteria (NTM), by Joseph O. Falkinham, III, Ph.D. (revised June 11, 2020). Other relevant publications also are referenced.

Flush and run water in unused lines to reduce water age. Water age refers to the time water stays in pipes in houses. The average water age in household plumbing is one to three days. When water stays in your pipes for more than three days it can lead to a loss of disinfectant and may cause NTM and other waterborne germs to grow. Increased water age can occur in plumbing in unused areas of a house (e.g., in an unused bathroom or unoccupied wing of a house). The solution is simple: have someone unlikely to be at risk for NTM disease flush commodes and run water (5 minutes) in taps in unused bathrooms and seldom-used laundry tubs, half baths, and outside faucets.1

Blogger’s note: Many of us will be traveling over the summer months and it is good to remember the above statement. Rental homes may not have flushed the systems for days before your arrival. Let others who do not have NTM lung disease or sensitive immune systems flush the infrequently used faucets, outdoor faucets, gardening hoses, etc. Doing something as simple as this can save you from getting an infection or reinfection while traveling.

Don’t drink water or use ice from a refrigerator. Many refrigerators come with outside taps for chilled water and ice. Do not use them as high numbers of NTM may be collecting in the refrigerator tap water and ice. The tap water coming into the refrigerator collects in a large reservoir and the warmth of the machinery raises the temperature of the water (before cooling), so the reservoir may contain lots of NTM. Use ice trays and bottles that are filled with boiled (10 min) or 0.2 micrometer-filtered water if you want cold water.1

Blogger’s note: My refrigerator water filter was tested years ago by the lab at Virginia Tech — the mycobacterium matched what was in my recent sputum sample.

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Categories: Quality of Life

Beginning the Journey of NTM Lung Disease

Posted on May 16, 2022   |   
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This post was authored by Christina Hunt, BS, RRT.

For many people, the diagnosis of a lung condition can be a very uncertain time. Feelings of worry, fear, and confusion can weigh greatly on those trying to decide their next steps for treatment, adjust to major lifestyle changes, and answer the all-important question of “Why me?” These challenges may seem more difficult for those diagnosed with a rare disease, such as Nontuberculous mycobacterial (NTM) lung disease. For those who have an NTM lung disease diagnosis, there is plenty to unpack in the beginning to understand the disease itself, why they may have been susceptible to this infection, and how they can make lifestyle changes to best manage their condition.

This diagnosis can be a complex one, so let’s start with the basics. There are 190 different types of NTM, but the most common is called Mycobacterium avium complex (MAC).1,2 This type of bacteria is found in soil and different fresh and natural water sources. NTM lung infections are thought to develop when a susceptible person comes in contact with these bacteria and breathes them into the lungs doing normal daily activities. These daily activities may include showering, bathing, drinking, hand washing, dishwashing, gardening, or just sleeping.3 While the healthy lung can remove NTM and stop these usually harmless bacteria from taking hold and finding “a home” in the lungs, people who have damaged lungs, weakened immune systems, and other predisposing conditions are more likely to become infected and be diagnosed with NTM lung disease.2 These lung conditions can include COPD, bronchiectasis, and prior tuberculosis.2,3 Women who have gone through menopause and people over the age of 65 are also more likely to have NTM lung disease.2,3 It’s important to note that NTM lung disease is not spread from person to person like its more well-known relative, tuberculosis.2

While NTM lung disease is considered a rare disease, rates have been increasing throughout the world. The increasing rate is likely due to more patients developing the infection, as well as due to improved testing methods and increased awareness of the condition.2 Patient symptoms can often be subtle, leading to delays in diagnosis, and may include long-lasting cough with or without mucus, also known as sputum, shortness of breath, weakness, fatigue, weight loss, and at times coughing up blood.2

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Categories: Quality of Life

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