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Talking to Your Child About Bronchiectasis and NTM Lung Disease

Posted on May 14, 2024   |   
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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

Bronchiectasis and NTM lung disease can impact every aspect of our daily lives and the lives of our children. Parenting while dealing with a chronic lung disorder can be very challenging at times, to say the least. Children pick up on cues, signs, and body language from an early age. Your child is always observing you.

Speaking with Your Child About Bronchiectasis and NTM Lung Disease

Communicating to your child honestly about your medical issues is of utmost importance. As a parent, we want to protect our children from the difficulties in life. As a nurse and a parent, I was anxious to communicate honestly with my daughter since I did not want to place a burden on her. I did not want her to feel as though she had to look after me. At the time, she was the child, and I was the parent. I just wanted her to enjoy her childhood.

The goal of the conversation is for them to understand how NTM and bronchiectasis impact your life. Explaining your condition on an age-appropriate level can assist in lessening their fears. The following suggestions may help you prepare to speak with your child:

  • Choose the right time and place for the discussion.
  • Discuss how NTM and bronchiectasis impact you physically and emotionally and how it can impact the family unit. Do not minimize the impact of the symptoms you are experiencing.
  • Make sure to simplify your medical language.
  • Accent your strengths, not just your weaknesses.
  • Be honest; ongoing trust is key to this discussion. If your child does not understand what is going on, then she/he may become more anxious when you are not feeling well, which may lead them to think the worst-case scenario.
  • Listen to her/his response and answer their questions.
  • Remind your child that they can always come to speak with you if they have questions or concerns.

Be certain to communicate to your child that you are doing your best to live life to the fullest, so you can be there for them. You and your child are working as a team. We must learn to practice better self-care to enjoy the best quality of life possible. As they say on the airplane, put an oxygen mask on yourself before you take care of someone else; the same applies here.

This conversation and experience will allow your child to grow in their compassion and empathy. It will also teach them how to be resilient and how to deal with adversity. Open communication encourages your child to communicate with you about this and future challenges.

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Categories: Quality of Life

Raising a Child When You Are Dealing with Bronchiectasis and/or NTM Lung disease

Posted on April 30, 2024   |   
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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

Energy levels can be unpredictable when you are dealing with a chronic lung disease such as bronchiectasis and/or NTM lung disease. Taking many antibiotics and/or other additional IV or inhaled medications can bring on major fatigue. Not to mention, the infection and inflammation in your body can also contribute to low energy levels. Add to that the additional responsibilities of health care visits and managing your condition can cause you to use up all your time and energy during the day while your child is in school.

It is heart-wrenching to adjust to a “new normal,” not having the same energy you had before diagnosis. However, it is important to get to the point of acceptance that bronchiectasis and/or NTM lung disease are part of your life. This can allow you to move forward to be the best possible parent, under the current (although difficult) circumstances.

Parents need energy to be “there” for their children once they return from school. There was a time when I was so exhausted from the Big 3 drugs that I had to rest much of the day to have enough stamina to look at and sign papers my daughter brought home at 3 p.m.

Lifestyle adjustments are necessary when you have a chronic respiratory condition. Consider these four areas regarding energy management when raising a child:

Nutritional — Many parents have trouble mustering up the energy to shop for food, prepare food and clean up afterward. Enlist the support of family, friends and neighbors to assist you in meal prep for the week (possibly over the weekends). Focus on well-balanced, high proteinand highly nutritious meals featuring fresh or frozen fruits and vegetables since they are the key to healing and the health of your child. Try not to resort to quick-fix, “kid foods” or frozen meals with little nutritional value. An investment in good health starts at a young age. Consider having your groceries delivered to conserve your energy for putting them away instead of using energy grocery shopping.

Emotional — Fatigue lessens our ability to stay strong at times with children. You may be tired from NTM and/or the meds, but setting boundaries with your child is critical. Try not to be passive because you are tired; you deserve respect. Your goal is to achieve a well-balanced, emotionally intact child. Your child will mimic your boundary-setting throughout their lives. Your child observes your daily energy levels and can see that you may not be feeling as well as previous days. Keep the lines of communication open with your child.

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Categories: Quality of Life Support

MAC2v3 study update – March 2024

Posted on March 11, 2024   |   
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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 mid-way through its 6th 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.

We are working hard to reach our new target enrollment of 466 participants, reduced from 500. As of February, we are pleased to share that the study has enrolled over 400 participants. We are hoping to finish enrollment this fall. This means there are still openings for new participants.

We continue to meet with our study advisory committee, patient advisory panel, and data monitoring committee regularly. These committees provide guidance and ensure that all aspects of the study remain safe. The MAC2v3 study does not have any analyses planned until all the data is in, so we need to follow all patients for 12 months before we can look at the results.

Patients can still 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.

Please note, patients must be enrolled prior to starting treatment. If you would like more information regarding participation, or to refer a patient, email MAC2v3@ohsu.edu and they will be happy to help. We have an amazing network of 30+ physicians at 22 sites in North America that are actively enrolling patients, from Hawaii to New York to Texas to Toronto, Canada.

For more information: visit www.MAC2v3study.org or clinicaltrials.gov [#NCT03672630]

Thanks for reading! Emily Henkle, PhD, MPH
MAC2v3 Co-investigator
OHSU-PSU School of Public Health Portland, OR


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Categories: Research

It's okay not to be okay with NTM/Bronchiectasis: Overcoming fear related to being diagnosed and dealing with an ongoing chronic diagnosis

Posted on November 17, 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

Feelings of anxiety following a diagnosis of a chronic illness are normal. A diagnosis like bronchiectasis and NTM lung disease can bring shock, denial, anger, and fear of the unknown.

Understandably, some may go through a grieving period when there is a change in their health or when learning of a new diagnosis. It is important to mourn your losses, feel the emotional pain, and not bury your feelings. Your health can be at risk if you choose to cope in a negative way. People with new diagnoses should process their feelings instead of finding ways to numb or ignore them.

Beyond the grieving period, we must somehow learn to accept the “new normal,” and find ways to adapt to any limitations that we have. One of my favorite quotes is “Worry is a substitute for not taking action.” We can choose whether we want to stay in the “mudhole” or get up and out of the hole to live a fuller life. It is important to set goals and to go forward. Develop an action plan to include your airway clearance schedule, medication/nebulizer schedule, exercise routine, and activities that bring you joy.

Coping skills and emotional support are extremely helpful in dealing with the frustrations faced along the way. Feelings of disappointment and despair occur with any chronic condition. Identify your coping skills and learn new ones as needed. According to the APA Dictionary of Psychology, coping refers to "the use of cognitive and behavioral strategies to manage the demands of a situation when these are appraised as taxing or exceeding one’s resources or to reduce the negative.”

Many people need to feel some control of their life events. Losing control can contribute to the development of anxiety or depression. Ongoing stress can cause increased levels of stress hormones and possibly decreased strength and further illnesses.1

My personal suggestions to assist you in coping:

  • Ask others to help you.
  • Engage in problem-solving.
  • Maintain emotionally supportive relationships.
  • Lower your expectations.
  • Distance yourself from sources of stress.
  • Utilize energy-management strategies.
  • Do not overbook yourself. Learn to say “no” when appropriate.
  • Learn to deal with JOMO, the Joy of Missing Out. Sometimes we push ourselves to do things when we are not feeling well, out of obligation.
  • Identify what you can control and what you cannot control.
  • Educate family and friends on your limitations of our “invisible condition” (especially before the holidays begin).

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Categories: Quality of Life

Mold and the Bronchiectasis/NTM Patient—A Lurking Health Danger

Posted on August 21, 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.

What is mold? Mold is another term for fungus. Mold grows inside and outside your home in places such as decaying vegetation, leaves, and damp wood. Mold multiplies by creating spores that can grow into mold when exposed to damp surfaces.

Mold spores can cause allergic reactions or infections, especially in people with suppressed immune systems or lung disorders. These two groups are at the highest risk of developing health problems after breathing in mold.1

There are many types of molds. Some types of molds form colonies that can be seen with the naked eye, while others are only seen under a microscope. Outdoor mold peaks throughout summer and decreases following the first frost in cooler climates.

Causes: Mold allergy symptoms are triggered by a sensitive immune system. Your body senses the mold spores as invaders and develops antibodies to fight them. Bronchiectasis can result when the lung is injured from swelling or infection of the airways. Molds can be a common cause of non-cystic fibrosis bronchiectasis.2

Symptoms: Mold allergy symptoms can vary depending on the type of mold and the type of reaction you experience. If you inhale mold into your lungs, it can cause a condition called bronchopulmonary aspergillosis (ABPA). Symptoms of ABPA can include:

  • coughing,
  • wheezing,
  • shortness of breath
  • worsening of asthma symptoms.3

If ABPA becomes more serious, it can cause chest pain, cough, coughing up blood, shortness of breath, fever, and potentially life-threatening symptoms if it spreads past your lungs.3

Mold allergy symptoms can range from mild to severe. You can have year-round symptoms or seasonal symptoms. There is also a possibility of developing greater symptoms when the weather is damp or when you are in an area with higher mold counts. 1

Diagnosis: Your health care provider will review your symptoms and your medical history. A skin test can be done to identify the specific mold causing the reaction. Your doctor may also run a blood test to look for fungal spores or antibodies in your blood. Additional testing may be performed like x-rays, CT scans, or bronchoscopy.1

Treatment: Your health care provider may recommend treatment if you are experiencing mold allergy symptoms. Corticosteroid drugs often help open your airways. You may need to use them daily or only as needed. Sometimes your HCP will prescribe an antifungal medication.

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Categories: Awareness

Heat Stroke and the NTM/ Bronchiectasis Patient

Posted on August 15, 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.

Sunshine, warmer weather, and longer outdoor days are a highlight of summer. There are so many great parts of summertime but for those dealing with lung conditions, the summertime can leave you more prone to heat-related issues. Heat-related illnesses happen when the body is unable to regulate its temperature when the temperature outside is high.

Mild forms of heat-related illness include edema (swelling), muscle cramps, and heat rash (miliaria rubra). Swelling can occur in the lower body, specifically the legs and feet. This is usually relieved by elevating the legs. A heat rash is caused when pores in the skin that are covered with clothing become trapped with sweat.1

If mild heat-related illness progresses, it can lead to heat exhaustion.1 Some signs of heat exhaustion occurring include hot skin, little to no sweating, increased heart rate, confusion, and poor coordination. Heat exhaustion can also cause headaches, dizziness, nausea, or vomiting. These conditions can lead to heat stroke if they aren't treated.1

Heatstroke, also called sunstroke, is the most severe form of heat-related illness. Heatstroke occurs when your body cannot cool itself down. It is caused when your body temperature reaches 104 or higher as a result of ongoing exposure to heat or exertion in high temperatures.2

There are 2 types of heatstroke: exertional and non-exertional. Exertional heatstroke usually results from being too active in hot, humid conditions. This can happen in as little as 2 hours. Non-exertional heatstroke occurs after exposure to hot, humid weather for long periods. Non-exertional heat stroke can occur due to age or chronic health conditions. It tends to develop over several days.2

Heatstroke Symptoms may include confusion, seizures, agitation, slurred speech, trouble walking, or loss of consciousness. High heart rates, headache, nausea, and vomiting are also symptoms.2


Risk factors that may increase your risk of heat-related illness include:

  • Age
  • Sudden increase in temperature, such as an intense heat wave
  • Lack of air conditioning
  • Drugs that affect your body’s ability to regulate temperatures (e.g., diuretics, sedatives, anti-depressants, heart and blood pressure medications) Talk to your pharmacist or health care provider if you are not sure if your medications impact temperature regulation.

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Categories: Quality of Life

Let’s Talk About Research!

Posted on July 18, 2023   |   
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This post was authored by Christina Hunt, BS, RRT, Director of Bronchiectasis and NTM Research and Education.

To be very honest, the topic of research and how to educate others on it gets very little attention when allied health professionals are training for their careers. In fact, in my short tenure here at the Foundation, I have learned more about research than in my 20 years of working at the bedside. There definitely are some misconceptions about research that I thought might need clarifying for our community. So, let’s talk about it!


Myth #1:
I will not see the benefit of participating in a clinical trial for years to come.

vs.

Truth:
In the short run, you may or may not. It is true that clinical trials will take quite a while to result in approved treatments, and you may not personally see a benefit during the trial itself. On the other hand, you may benefit from participating in clinical trials by getting access to treatment to which you would normally not have access. And in the long run, successful clinical trials are the only way to see new treatments approved for the disease or condition you may be living with. Clinical trials need to have heavy involvement from the patient community in order to prove that medications and/or other forms of treatment are effective.


Myth #2:
I need to live close to a research facility to participate in a clinical trial.

vs.

Truth:
Not all clinical trials need participants to live nearby. Some facilities or research sites will allow participants to take part virtually and have any necessary testing done at their local health care facilities. When a clinical trial is conducted, each trial will have guidelines for participation. Before participating, all details required by the participant will be reviewed and agreed upon. This way you can make an informed decision on whether participating will be right and convenient for you.


Myth #3:
Participating in a clinical trial will negatively affect my health.

vs.

Truth:
The goal of clinical trials is to advance research to improve the health of those with specific conditions. Yes, there are potential risks. There are also potential benefits to participating in a trial.

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Categories: Research

VATS and the Bronchiectasis/NTM Patient

Posted on June 20, 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.

Occasionally we have questions from our community members about video-assisted thoracic surgery, also known as “VATS.” This is a surgical procedure used to diagnose and treat problems in the chest area when cheaper, less invasive options have not provided answers. Surgeons insert a thin instrument with a camera called a thoracoscope into a small incision in a patient’s chest. The scope allows the surgeon to view the inside of the chest. Being able to see inside the chest helps the surgeon guide and perform procedures.1

VATS helps health care providers to

  • Establish diagnoses or treat conditions, including infection or other processes, which involve the lining of the lung.
  • Take tissue samples and examine them under a microscope.
  • Remove small parts of the lung for diagnostic purposes.
  • Remove a large section of the lung to treat select lung conditions or infections.2

Before a VATS procedure. Patients will be given instructions on what to do before the procedure by their surgeon’s office. Fasting before surgery is required. The patient may be asked not to take certain medications, vitamins, and herbal supplements before the procedure.

Testing such as an EKG (a test that monitors the electrical activity in your heart), chest X-ray, CT scan, PET scan (positron emission tomography), PFT (pulmonary function test), and blood tests may be ordered before the procedure.

Before the procedure, ask about the weekend/ holiday contact information for your doctor’s office.

What to expect. The VATS procedure is done in a hospital or an outpatient surgical center under anesthesia by specially trained surgeons or pulmonologists. The physician will either make several small incisions or a single incision. He/she will then insert the thoracoscope device, which sends pictures of the inside of the chest to a video monitor. The video images will be used to guide the procedure. The surgeon will insert some small tubes into the chest once the procedure is completed. These chest tubes allow for the drainage of any fluid or air. Any tissue samples will be sent to a lab for testing. The tissue may be tested for signs of infection or disease.


Benefits of VATS include:

  • Smaller and fewer incisions than the traditional open surgery known as a thoracotomy.
  • Shorter hospital stays.
  • Less pain and scar tissue after the procedure
  • Less need for a blood transfusion
  • Lower chance of infections and other post-op problems

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Categories: Awareness

The West Meets the East: Complementary Medicine Options

Posted on May 08, 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.

Complementary medicine describes the types of treatments you may be given along with traditional Western medicine. In the past, many referred to Western medicine as traditional medicine, and Eastern medicine as Complimentary Medicine. Integrative medicine mixes traditional Western medicine with researched, evidence-based complementary therapies to achieve the best results for each patient.

The National Center for Complementary and Integrative Health divides complementary medicine into four categories: nutritional, psychological, physical, and combination.1

Nutritional - how someone eats daily which may include special diets, dietary supplements, herbs, probiotics, and other therapies.

Psychological - may include meditation, music therapies, and relaxation therapies.

Physical - may include acupuncture, massage, and spinal manipulation.

Combination - may include multiple types of complementary medicine from the other three categories.

It is not recommended that those with lung conditions substitute integrative medicine for traditional medical care. These therapies should be combined with traditional medical care.2

Reiki, which began in Japan is a therapy based on a "life force energy" flowing within your body. When a person’s energy is low, they may get sick. The goal of Reiki is to restore this energy.

Ayurveda started in India and focuses on using treatments that involve purification panchakarma (a treatment that uses medicated oils and herbal remedies to detox the body via massage3), herbal remedies, special diets, yoga, massage, and meditation to treat certain conditions.

Naturopathy which began in Europe views disease as changes by which the body naturally will heal itself over time. The term "naturopathy" translates as "nature disease."

Homeopathy uses very naturally occurring substances to treat ailments. These practitioners believe that a very small amount of a substance that causes symptoms of a disease in healthy people can cure similar symptoms in sick people.4

Chiropractic medicine continues to increase in popularity in the U.S. Seeing a chiropractor may help to reduce pain and improve how your body functions. Techniques are used to work with your spine, joints, and skeletal system and help align your body.5

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Categories: Quality of Life

Have You Heard of Refractory NTM?

Posted on May 03, 2023   |   
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This post was authored by Christina Hunt, BS, RRT, Director of Bronchiectasis and NTM Research and Education.

The occurrence of nontuberculous mycobacteria (NTM) lung disease rises each year1, yet many have never heard of this condition. NTM are common bacteria found in soil and water sources (both residential and naturally occurring). The most common type of NTM is called Mycobacterium avium complex, or MAC for short. These bacteria can be inhaled into the lungs and cause an infection. Most people can inhale the bacteria without getting an infection, but if you have a pre-existing lung condition like COPD or bronchiectasis, you may be more likely to develop an NTM lung disease.2

When someone is diagnosed with an NTM lung infection that requires treatment, they are typically treated with multiple antibiotics at the same time. NTM are hard to kill, so it is expected that those who are being treated with medications stay on them for 12 months after their sputum cultures are clear of the bacteria.3 While on treatment, sputum will be collected regularly as part of routine monitoring. If, after 6 months of initial treatment, sputum samples remain positive, the patient is considered to have refractory NTM lung disease. When this happens, health care teams may choose to change and/or add to the type of medication that a person is taking.4 Health care teams hope that this treatment change will kill the NTM and that the sputum culture will show less NTM in the lung.

If NTM lung disease is left untreated, further damage can occur to the lungs. This may lead to the person with NTM lung disease having worsening lung function and quality of life. In select cases of refractory NTM lung disease, doctors may choose to surgically remove sections of the lung that seem to be extremely damaged.5 This procedure, also known as lung resection, is only done by highly qualified, skilled surgeons.

Currently, research studies are being conducted on NTM, including refractory NTM lung disease. You can learn more about these studies by visiting the Ongoing/Actively Recruiting Studies page. Have you ever been diagnosed with refractory NTM lung disease? Tell us more about your experience below.

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Categories: Research

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

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