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There is growing excitement in the bronchiectasis community around new medications that may help reduce inflammation and slow disease progression. Two of the most talked about therapies right now are brensocatib (BRINSUPRI®) and verducatib. These medications represent a new class of treatment known as DPP1 inhibitors, designed to target inflammation at its source. At the same time, it is important to understand how these medications work, who they may help, and what options exist if they are not accessible. How Brensocatib Works and What to Expect During a recent patient webinar, Prof. James Chalmers from the University of Oxford shared important insights about brensocatib. It Does Not Work Instantly One key takeaway is that brensocatib does not provide immediate results. It typically takes about four weeks to begin having an effect. This is because the medication works at the level of the bone marrow. It influences inflammatory cells before they enter the bloodstream. Those cells then travel to the lungs, which takes time. Understanding this timeline can help set realistic expectations when starting the medication. Early Patient Experience Some early patient reports have been encouraging. One individual shared: “I’ve been on it for almost two months. I feel like a normal person for the first time in four years. No side effects. I’ve been on 25 milligrams since September. No wheezing or chest congestion anymore. I still cough, but there is less in my lungs.” Of course, not every experience has been entirely positive. Some individuals have reported side effects, including skin changes. As with any new medication, responses can vary from person to person. What We Still Do Not Know Even with FDA approval of brensocatib for non-cystic fibrosis bronchiectasis, several important questions remain.
Verducatib and the AIRTIVITY™ Clinical Trial If brensocatib is not available or affordable, another option to explore is the AIRTIVITY™ clinical trial studying verducatib. Verducatib is a similar DPP1 inhibitor and is currently being studied worldwide. Clinical trials like this are essential for:
An Established Option: Azithromycin Prophylaxis While new therapies are emerging, existing treatments remain an important part of care. During a recent support group discussion, Dr. Ed Chan a researcher at National Jewish Health, in Denver, Colorado, emphasized the continued role of azithromycin. Why Azithromycin Is Used Azithromycin is often prescribed on a regular basis, such as weekly or several times per week, to:
Important Safety Consideration: NTM Monitoring Long-term azithromycin use requires careful monitoring. Patients should be regularly tested for nontuberculous mycobacterial infections. Why This Matters If an NTM infection develops:
Balancing Hope with Reality There is real momentum in bronchiectasis research, and that brings hope. At the same time, not everyone has access to newer therapies yet. It is important to:
Looking Ahead
Medications like brensocatib and verducatib represent an exciting step forward in bronchiectasis care. At the same time, established therapies such as azithromycin remain valuable tools. The future of bronchiectasis treatment will likely involve a combination of:
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Have you tried everything to get rid of reflux and still no luck? I think I may be able to help. It can be incredibly frustrating when you’ve done all the right things. You’ve seen specialists, had testing, adjusted your diet, and maybe even elevated the head of your bed. And yet, the symptoms remain. A drippy nose, hoarseness, sore throat, or that persistent feeling that something is stuck in your throat. And it’s not just about the reflux. For those of us living with bronchiectasis, there is also the concern about how reflux, both acid and non-acid, may be contributing to disease progression. That uncertainty can create real anxiety. Let’s walk through a few commonly overlooked factors that may be playing a role: The Connection Between Reflux and Bronchiectasis Reflux is not always straightforward. While many people think only about acid reflux, non-acid reflux can also contribute to symptoms and may be harder to detect. In bronchiectasis, reflux can potentially:
Overlooked Triggers That May Be Worsening Your Reflux 1. Are You Using Albuterol Before Airway Clearance? Albuterol can be very helpful for opening the airways. For some people, it is an essential part of their routine. However, it is not always necessary for everyone. Because it relaxes smooth muscle, it may also relax the lower esophageal sphincter. This can allow stomach contents to move upward, contributing to reflux symptoms. You might consider asking during your next pulmonary function test if your breathing can be evaluated with and without albuterol. If it does not make a meaningful difference, it may be worth discussing whether you need it. 2. Are You Staying in Tight Clothing After Exercise? This is easy to overlook. Tight clothing, including workout wear, can increase pressure between the abdomen and chest. That pressure can contribute to reflux. A simple change into looser clothing after exercise may help reduce symptoms. 3. Are You Bending at the Waist Throughout the Day? Even if you avoid eating late and elevate your bed, daytime habits matter. Activities like:
Try bending at the knees or hinging at the hips instead. 4. Could Your Supplements Be Contributing? This is a big one that is often missed. Some supplements, especially those with acidic components such as ascorbic acid (vitamin C), can trigger reflux symptoms in certain individuals. In addition, it may not be just one supplement. It could be:
5. Are You Drinking Carbonated Beverages? Carbonated drinks, including sparkling waters like LaCroix, Pellegrino, and Topo Chico, can increase stomach pressure. As much as many of us enjoy them, they may worsen reflux symptoms and are worth limiting. 6. How Is Your Stress Level? A certain amount of stress is part of life. In fact, it helps motivate us. But chronic stress can impact gut function and worsen reflux symptoms. Incorporating stress management practices, even small ones, can make a meaningful difference over time. Why Reflux Can Feel So Hard to Control One of the most challenging aspects of reflux is that it is often not caused by just one factor. It is usually a combination of:
A Gentle Reminder
If you are dealing with ongoing reflux, you are not alone. Sometimes it is not about finding one perfect solution. It is about identifying several small factors that, when adjusted, can collectively make a difference. And as always, any changes should be discussed with your medical team. Research Opportunity - Mab Biobank for Phage Therapy Development Tolka AI Therapeutics is building a biobank specifically for Mycobacterium abscessus to advance personalized bacteriophage therapy research. This IRB-approved study (BRANY#25-08-468-1945) aims to collect Mab isolates that could lead to personalized treatment options.
What We're Doing: We're collecting sputum samples from Mab patients to isolate bacteria for phage discovery. If we find active phages against your specific Mab strain, you could potentially access personalized phage therapy through future clinical trials or expanded access programs. Participation Details: ● Two sputum samples collected at home ● All materials and shipping provided (no cost) ● Brief medical history questionnaire ● Optional monthly QOL-B surveys You're Eligible If: ● 18+ years old ● Live in the US ● Have Mab documented from respiratory specimens ● Can safely produce sputum This is a unique opportunity to contribute to research that could directly benefit you and the broader M abscessus community. Sign up or learn more: tolka.ai/biobank Questions: [email protected] If you live outside the United States, this bronchiectasis conference hosted by the European Lung Foundation was made for you. To our dear overseas Bronchi-family… get ready for one of the best conferences of the year! I know there have been several bronchiectasis webinars held in the United States that were not always convenient for those of you living in other parts of the world. This upcoming conference, on March 21, 10:00-16:00 CET, however, is one you will definitely want to sign up for. One thing I absolutely love about it is that translation services will be available, so hopefully you will be able to listen in your own language. Click to SIGN UP NOW!!!
The Bronchiectasis and NTM Association has accepted 25 new Care Centers into the Bronchiectasis and NTM Care Center Network (CCN). These eight Care Centers and 17 Clinical Associate Center sites in 14 states, added to the previously approved 33 Centers, bring the current total to 58 centers across the United States. The CCN aims to facilitate access to specialized care and support for the hundreds of thousands of people with bronchiectasis and nontuberculous mycobacterial (NTM) lung disease.
“The prevalence of bronchiectasis and NTM lung disease continues to increase. Patients deserve access to high-quality, specialized care and resources,” said Doreen Addrizzo-Harris, M.D., Chair of the CCN Steering Committee. “The CCN’s innovative, nation-wide network will help us enhance care and improve quality of life for those living with these conditions, as well as accelerate progress toward a cure.” Centers accepted into the CCN receive a designation of either a Bronchiectasis and NTM Care Center or a Bronchiectasis and NTM Clinical Associate Center, based on institutional resources and infrastructure. The requirements are established by the CCN’s Steering Committee, comprised of leading experts in the field. The new Bronchiectasis and NTM Care Center sites are: The new Bronchiectasis and NTM Clinical Associate Center sites are: Why This Expansion Is Encouraging For many people living with bronchiectasis, finding knowledgeable clinicians can be challenging. The expansion of the Care Center Network means that more patients across the United States may gain access to specialized care and coordinated treatment teams. These centers bring together pulmonologists, infectious disease specialists, respiratory therapists, dietitians, and other professionals experienced in managing bronchiectasis and NTM lung disease. As the network continues to grow, will help improve diagnosis, treatment, and quality of life for the hundreds of thousands of people living with these conditions. Interested in the thirty-three previously approved bronchiectasis and NTM Centers? Or, go to the Bronchiectasis and NTM Association’s Care Center Network page to find a center by location and zip code. When I was first diagnosed with bronchiectasis, one of the most confusing parts of the journey was figuring out who should be managing my care. Should I see a pulmonologist? An infectious disease specialist? A respiratory therapist? Over time, I realized something important: bronchiectasis is a complex condition that often requires a team of experts working together. Fortunately, in the U.S., this type of coordinated care is becoming more common. The Bronchiectasis & NTM Association has created a Care Center Network designed specifically to support people living with bronchiectasis and nontuberculous mycobacterial (NTM) lung disease. These specialized centers bring together clinicians with expertise in diagnosing and managing these conditions. The goal is simple but important: reduce the time to diagnosis and provide comprehensive, high-quality care. What Is a Bronchiectasis Care Center? A bronchiectasis care center is a specialized medical program where multiple healthcare professionals collaborate to diagnose and manage bronchiectasis and nontuberculous mycobacterial (NTM) lung disease. These centers typically include pulmonologists, infectious disease specialists, respiratory therapists, dietitians, pharmacists, and mental health professionals who work together to provide coordinated, comprehensive care for patients. Why Specialized Bronchiectasis Care Is Important Bronchiectasis and NTM infections are being diagnosed more frequently worldwide. Yet many patients still experience long delays before receiving an accurate diagnosis or appropriate treatment. Patient surveys have shown that many individuals feel their care is fragmented and that support services are limited. Other complex medical conditions have demonstrated that multidisciplinary care improves outcomes. Diseases such as cystic fibrosis, HIV, and cancer are often treated in specialized centers where multiple experts collaborate to manage all aspects of the disease. Bronchiectasis care centers are built on a similar model. What Patients Should Expect From a Bronchiectasis Care Center A bronchiectasis care center focuses on coordinated, patient-centered care. While each center may operate differently, most share several key features. Patients can generally expect:
More specific services will include: Education and ongoing monitoring Care centers often provide follow-up appointments and patient education between visits. Access to additional specialists when needed Patients may be referred to experts such as dietitians, mental health professionals, or pulmonary rehabilitation programs. The Bronchiectasis Care Team Because bronchiectasis affects many aspects of health, care centers rely on a multidisciplinary team of specialists. Pulmonologists and Infectious Disease Specialists Pulmonologists focus on lung structure and airway disease, while infectious disease physicians evaluate bacteria identified in sputum cultures and determine whether treatment is necessary. Collaboration between these specialists is often essential when managing bronchiectasis and NTM infections. Program Coordinator Many care centers include a program coordinator, often a nurse, who serves as the main point of contact for patients. This person may help coordinate testing, obtain medical records, communicate with providers, and assist patients with navigating their care. Respiratory Therapy and Airway Clearance Airway clearance is a cornerstone of bronchiectasis treatment. Respiratory therapists teach techniques to help patients clear mucus from their lungs and guide them in using airway clearance devices such as nebulizers, positive expiratory pressure devices, and chest oscillation vests. Nutrition Support Bronchiectasis can sometimes affect appetite and digestion. Some patients experience reflux, reduced appetite, or unintended weight loss. Maintaining adequate nutrition is important for lung health, and dietitians can help patients develop individualized nutrition plans. Mental Health and Social Support Living with a chronic lung disease can affect emotional well-being. Anxiety and depression are common among patients with bronchiectasis. Mental health professionals and social workers can help patients address emotional challenges, navigate healthcare systems, and connect with supportive resources. Additional Specialists Involved in Bronchiectasis Care Because bronchiectasis can be associated with other conditions, additional specialists may become involved in care. These may include: • gastroenterologists for reflux and digestive issues • ear, nose, and throat specialists • allergists and immunologists • genetic counselors • thoracic surgeons For example, gastroesophageal reflux disease (GERD) is common in bronchiectasis and may worsen lung symptoms. How to Find a Bronchiectasis Care Center If you are interested in receiving care at a specialized center, the Bronchiectasis & NTM Association maintains a Care Center Network across the United States. Even if most of your care is provided locally, many patients benefit from periodic consultations with specialists at these centers, who can help guide treatment decisions. Frequently Asked Questions Do I need to go to a bronchiectasis care center? Not everyone needs to receive all of their care at a specialized center. However, many patients benefit from at least one consultation with clinicians who have expertise in bronchiectasis and NTM lung disease. Can I still see my local doctor? Yes. Many patients continue to work with their local pulmonologist or primary care physician while also consulting with a specialized center. This collaborative approach helps ensure continuity of care. What specialists treat bronchiectasis? Bronchiectasis care often involves a team that may include pulmonologists, infectious disease specialists, respiratory therapists, dietitians, pharmacists, mental health professionals, and social workers. Why is airway clearance important? Airway clearance helps remove mucus from the lungs, reducing infections and improving breathing. Respiratory therapists often teach patients how to perform these techniques and use airway clearance devices effectively. These are encouraging times Bronchiectasis and NTM lung disease are complex conditions, but patients should not have to manage them alone. Specialized bronchiectasis care centers represent an important step toward improving diagnosis, treatment, and long-term outcomes. By bringing together pulmonologists, infectious disease specialists, respiratory therapists, dietitians, and other professionals, these centers provide comprehensive, patient-centered care that can make a meaningful difference for people living with bronchiectasis. After several years, I finally cleared a Mycobacterium avium complex (MAC) infection. It was a long journey that required patience, consistency, and a deep commitment to my health. What Is Mycobacterium Avium Complex (MAC)?MAC is a type of nontuberculous mycobacterial (NTM) lung infection. It often occurs in people with bronchiectasis. Bronchiectasis (BE) can cause mucus to build up in the airways, creating an environment where bacteria are more likely to grow and persist. However, it is not always clear which came first. Did the bronchiectasis create the conditions for the infection, or did the infection contribute to airway damage and cause the BE? In some cases, it truly can be a “chicken or the egg” situation. Symptoms Can Vary WidelyPeople experience MAC very differently. Some individuals struggle with symptoms such as night sweats, debilitating fatigue, chronic cough, and daily sputum production. Others may have very few symptoms and feel relatively well even while the infection is present. Because symptoms and disease severity can vary widely, treatment decisions are often individualized and difficult to make. When Antibiotics Are Recommended for MACWhen my infection was first diagnosed, my doctor recommended antibiotic therapy. Standard treatment for MAC often involves several antibiotics taken for a long time — often over a year. Choosing a Different Initial ApproachIn my case, after careful discussion with my physician, I initially chose a different approach. As an experienced health coach, I decided to focus on myself as my only client and see whether I could clear the infection without starting antibiotics right away. I committed to what I called building a brick house. Rather than relying on one single intervention, I focused on laying one brick at a time through consistent airway clearance, regular exercise and movement, and healthy lifestyle practices, including stress management and reflux control. At the same time, I continued to monitor my condition closely with my medical team and understood that antibiotics remained an option if my condition worsened. A Long but Meaningful JourneyIt was not a quick or easy process. But after several years, my cultures finally cleared. My experience is not meant to suggest that everyone can or should follow the same path. Many people with MAC absolutely require antibiotic treatment, particularly those with cavitary disease or who are very symptomatic. This decision should always be made with a physician who is well-trained in bronchiectasis and Non-tuberculous Mycobacteria lung diseases, such as MAC. But my journey is a reminder that there can sometimes be more than one path forward. Steady, consistent care of our lungs and overall health can make a meaningful difference over time. For me, the process of building that brick house, one daily habit at a time, became the foundation for protecting my lungs and supporting my long-term health. *Common Questions About MAC Lung Disease*How long does it take to clear a MAC infection? MAC infections can take a long time to treat or resolve. When antibiotics are used, treatment often lasts at least 12 months after cultures become negative. If cultures are not converting by six months, the protocol is often changed to daily medication rather than three times a week, and an inhaled antibiotic might be added. Do all people with MAC infection need antibiotics? Not always. Some people with mild symptoms and no cavitary disease may opt for "watchful waiting" and be monitored closely before starting treatment. Others, particularly those with more severe disease or significant symptoms, may benefit from antibiotic therapy. Decisions about treatment should always be made with a pulmologist and/or infectious disease doctor who specializes in bronchiectasis and MAC lung disease. Can lifestyle habits help support lung health with MAC or bronchiectasis? Absolutely! While lifestyle practices are not a cure for bronchiectasis and chronic lung infections, consistent habits such as airway clearance, exercise, stress reduction, reflux management, and good sleep can play an important role in supporting lung health and overall well-being.
My story and the practices I used to build a stronger and more resilient body are discussed in my book, The BE CLEAR Method to Living with Bronchectasis, available on Amazon. This post is for educational purposes only. It reflects my personal experience and should not be considered medical advice. Never change your treatment plan without discussing it with your medical team. “Recent research has revealed that… neutrophils are not normal in bronchiectasis. I mean, they are fundamentally different. They have delayed apoptosis compared to the normal host…” Dr. Pamela McShane Yes, it is one of those words that sounds like what it actually is. But before we get there, we need to talk about those ever-discussed immune cells called neutrophils. What are neutrophils supposed to do? Neutrophils are white blood cells that act as the body’s first responders. Their role is to rush to infection sites and kill bacteria quickly and aggressively. Just as importantly, once their job is done, neutrophils are supposed to die off promptly through a tightly regulated, natural process called apoptosis. This allows inflammation to resolve and tissues to heal. In a healthy immune system, this entire cycle is fast and well-controlled, typically completed within a few days. Neutrophils themselves are not harmful. In fact, they are essential for fighting infection. The problem arises when their activity is not properly regulated. What goes wrong in bronchiectasis?In bronchiectasis, neutrophils are fundamentally altered. They do not behave the way they should. Instead:
Neutrophils are meant to be short-term emergency responders. Their weapons are powerful by design, but they are intended to be used briefly. In bronchiectasis, however, these cells linger and continue firing within already vulnerable airways. Why delayed apoptosis causes harmWhen neutrophils fail to undergo apoptosis:
The degree of delayed apoptosis and neutrophil-driven inflammation can vary from person to person, which helps explain why bronchiectasis severity and progression differ so widely among individuals. A newer approach: calming neutrophils, not eliminating themIt has been about five months since some people started Brinsupri™, and early feedback is beginning to emerge. Many who choose to share their experiences publicly report benefits such as less breathlessness and more energy. Everyone’s experience is different, but these early observations are encouraging. So how does Brinsupri (brensocatib) work? Brinsupri does not stop the body from making neutrophils. The immune system still sends these cells into the lungs as usual. What Brinsupri appears to do is make neutrophils less damaging. This reflects a reduction in harmful neutrophil-driven inflammation rather than elimination of neutrophils or suppression of the immune system. With Brinsupri, neutrophils remain present but tend to be less aggressive, cause less irritation and injury, and trigger less ongoing inflammation. In simple terms, Brinsupri helps calm neutrophils down. It does not kill them. It does not force them to die sooner. It helps reduce the ongoing lung tissue damage they can cause once they reach the lungs. These therapies are intended to limit inflammatory injury and may help slow disease progression, but they do not reverse existing structural airway damage. Deciding when or whether to consider treatmentSome people are choosing to wait to see how others respond to the new medication. This can be a reasonable and thoughtful approach.
However, if your lung function is declining or you are experiencing frequent exacerbations, the ongoing damage also needs to be considered. Each exacerbation can leave lasting effects on the airways and influence long-term outcomes. At your next medical visit, consider asking your clinician about Brinsupri and whether it might be an option for you. There are also similar therapies currently in clinical trials that may become available where you live. Understanding the biology behind bronchiectasis empowers patients to have more informed, collaborative conversations with their care teams. Educate. Self-advocate. Share information with others. As a personal trainer, I have always enjoyed lifting weights. Now, with bronchiectasis and a history of MAC, I have an extra reason to stay strong. I am at the gym most days and often write social media posts or work with clients in between 30-minute workout sessions. Some days I complete one session, other days two, and occasionally I add a shorter half-session depending on how my body feels. Fueling Before and After WorkoutsBefore heading to the gym, I always eat. That might include peanut butter on toast, Greek yogurt, eggs, a banana, or berries, along with my must-have coffee. After my workout, I eat again, making sure to include both protein and carbohydrates. This consistent fueling is the only way I have enough energy to train and the ability to build and maintain muscle. Without adequate nutrition, strength gains are limited, especially for those of us managing chronic lung conditions. Training With Breathing in MindLately, I have been separating my upper- and lower-body workouts, but there is no single right approach. What matters most is paying attention to balance. I focus on strengthening my chest and neck muscles to support airway clearance, while also stretching them to prevent tightness and neck pain. As I discuss in my book, The BE CLEAR Method to Living with Bronchiectasis, it is equally important to strengthen and stretch the back muscles. People with bronchiectasis often round forward during coughing and while using airway clearance devices. Addressing both the front and back of the body helps counteract this pattern. A Functional, Whole-Body ApproachThis front-and-back approach supports posture, breathing, overall strength, and endurance. It also builds confidence. Strong muscles help make daily activities easier and breathing more efficient. Start slowly. The exercises in my book are well-suited for beginners and also helpful for more experienced exercisers who want to identify imbalances and build full-body strength. A Few Important RemindersAlways nourish your body before and after exercise. Without proper fueling, it is difficult to achieve meaningful results. If you have GERD, you may need to wait a bit after eating before exercising.
As discussed in a previous post, including a carbohydrate can help absorb stomach fluid and reduce reflux. Before starting, stopping, or changing any exercise program, be sure to get medical clearance from your physician. You can find my book on Amazon! In the inspiring video Living and Breathing with Art, Maggie Hart shares her personal journey with bronchiectasis and chronic lung disease, a condition she has lived with since age 28. Despite facing significant medical challenges, including two lobectomies, Maggie reflects on how art has become a powerful source of calm, grounding, and peace in her life. As a former licensed independent clinical social worker, Maggie brings a deep understanding of the emotional and mental toll of chronic illness. She speaks openly about anxiety, uncertainty, and fear, and how creative expression has helped her navigate these challenges. Through painting, Maggie finds a space where she can be fully present, momentarily setting aside illness and worry to immerse herself in the creative process. Her artwork often tells a story of strength and resilience. One particularly meaningful piece, Breath and Flowers, was created before her second lobectomy and helped Maggie reframe her lungs as something beautiful and life giving rather than something to fear. She also shares her old doors series, which symbolizes the doors that close and open throughout life, mirroring the emotional journey so many people experience while living with chronic illness. The video includes a gentle, guided art exercise using only a pen and paper. It is designed to help viewers slow down, relax, and tap into their imagination. Maggie emphasizes that artistic ability is not required, reminding us that we are all wired for art and self-expression. She also offers a thoughtful reminder to be mindful of art supplies that may be harsh on the lungs, reinforcing the importance of creativity that supports both emotional and physical well-being. Maggie’s message is a beautiful reminder that art can be more than a hobby. It can be a tool for healing, reflection, and connection, especially for those navigating life with chronic illness. Thank you, Maggie, for sharing your story. You are the soul of our bronchiectasis community. Maggie's Video |
| Small, realistic steps support our health. Don’t wait until after the New Year. Start NOW! | |
Fragrance exposure can trigger coughing, chest tightness, or even an exacerbation. With a bit of preparation and open communication, you can enjoy the season while protecting your breathing and staying well.
How to Communicate With Your Host
Your host can then mention the scent sensitivity to invited guests or simply avoid using strongly fragranced items during the gathering. This is not being overly demanding. It is a small request that protects your health.
What to Do If You Arrive and Scents Are Already Present
Is Bringing Your Own Air Purifier Appropriate
The key is to let your host know in advance. A brief explanation, such as, I have a lung condition, and bringing a small air purifier helps me stay well, is usually enough. Hosts are often grateful for the clarity.
You Are Not a Killjoy for Protecting Your Health
A caring host wants you to feel well. They would never want a guest to become ill because of fragrance exposure.
A Holiday Should Be Enjoyed, Not Endured
Protecting your breathing is never rude. It is responsible and thoughtful. When you take care of yourself, you can enjoy the holiday with more energy, more calm, and more presence.
I had no idea that the real concern was how those bacteria could be aspirated into the lungs through reflux. That was a true deer-in-the-headlights moment for me.
At first, I handled the issue by boiling pot after pot of water. Then I moved on to buying jugs of bottled water, which took up precious real estate in our one-bedroom apartment. Eventually, I settled on the LifeStraw pitcher, which felt like a better long-term fit.
But what never crossed my mind was that the same concerns applied to ice. Ice trays, built-in refrigerator ice makers, and even refrigerator filters can harbor bacteria and biofilm.
Once I learned that, things clicked. Now I am much more cautious with ice, and when I visit my daughters, I skip the built-in ice and water dispensers. In restaurants, I rarely order drinks that come from taps, and I avoid water coolers because they can develop internal biofilm.
Looking back, I realize I probably was not ready to understand everything all at once. I needed the information to build slowly over time. And that is perfectly okay.
Sometimes it really can feel like too much until we baby-step our way into new habits.
This is my daily meditation mantra, and it reflects the way I choose to move through life while living with bronchiectasis for more than 30 years.
A Life Built on Movement and Mindfulness
Finding New Purpose Through Creativity
I am now an award-winning watercolor artist and digital creator. Art continues to bring me presence, joy, and emotional release.
One of my greatest joys is creating AI images for children with cancer. I am part of a global Facebook community that sends artwork to pediatric cancer units around the world. It is one small way to offer comfort, connection, and imagination during the hardest moments. A mission that is very close to my heart.
Living with Bronchiectasis Not Defined by It
Hope for the Future with Brinsupri
It also means conserving energy so we can enjoy the festivities too. And remember, you never have to overexplain yourself. The people who love and care about you do not need a manual to understand that you are doing your best.
As you plan and prepare for Thanksgiving and the upcoming holidays, keep this gentle reminder close.
Why I Joined the NYU Biobank
Call me a little eccentric, but knowing that my data, sputum, and blood are now in their system and biobanks makes me feel proud.
Much more on this to come.
Why Patient Input Matters in Research
Now I understand that the FDA requires patient input, which is why so many surveys exist. And when companies decide where to invest their research dollars, they rely on hearing from us to understand what the community truly needs.
Surveys Count as Research
And that counts.
An Upcoming Research Opportunity for Our Community
I hope you will keep all of this in mind and fill out the preliminary information. And the good news is that we will be paid for our time. I firmly believe that all stakeholders should be on equal footing. Scientists are compensated for their time and expertise, and we should be too.
If you choose to donate your honorarium to charity, that is entirely your decision. What matters most is that we have a seat at the table and that our time is valued.
This annual event brings together leading clinicians, researchers, advocates, and patients for a full day of learning, connection, and practical guidance. Whether you are newly diagnosed or have been living with bronchiectasis or NTM for years, this conference offers valuable insights into clinical care, airway clearance, inflammation, genetics, environmental factors, and the latest research discoveries.
Why You Should Attend
clinical care networks, international data, global advocacy, NTM epidemiology, genetics, airway inflammation, guideline updates, and emerging clinical trials.
You will hear directly from respected leaders in the field, including:
- Dr Timothy Aksamit
- Dr Doreen Addrizzo Harris
- Dr Ashwin Basavaraj
- Dr Charles Daley
- Dr David Kamelhar
- Dr Shannon Kasperbauer
- Dr Ted Marras
- Dr Marcela Munoz
- Dr Anne O’Donnell
- Dr Kenneth Olivier
Dedicated question and answer sessions give attendees the chance to hear expert perspectives on the issues that matter most.
Registration Details
.nyulangone.org/care-services/bronchiectasis-ntm-program/ntm-patient-education-program
Interested in attending the professional conference virtually? ($399)
Contact Marla Hymes at
[email protected]
212 263 5183
Agenda for December 1, 2025
Registration
10:00 AM
Opening Remarks – Doreen Addrizzo Harris, MD
10:05 AM
US Clinical Care Networks – Doreen Addrizzo Harris, MD
10:15 AM
Canadian Database and Updates – Ted Marras, MD, MSc
10:30 AM
Updates from Latin America – Marcela Munoz, MD
10:45 AM
Global Awareness and Advocacy Initiatives – Timothy Aksamit, MD
11:00 AM
Epidemiology and The Environment with NTM – David Kamelhar, MD
11:15 AM
Question and Answer
11:35 AM
Break and Lunch
12:15 PM
Genetics in Bronchiectasis – Kenneth Olivier, MD, MPH
12:30 PM
Inflammation in Bronchiectasis – Anne O’Donnell, MD
12:45 PM
Guideline Updates – Ashwin Basavaraj, MD
1:00 PM
NTM Updates – Shannon Kasperbauer, MD
1:15 PM
Clinical Trial Update and Future Research Directions – Charles Daley, MD
1:30 PM
Question and Answer
1:50 PM
Closing Remarks – David Kamelhar, MD
Need to Make Changes to Your Registration?
[email protected]
212 263 5183
Reach out if:
- You registered for virtual attendance but now prefer to attend in person
- You registered for in person attendance but now prefer to attend virtually
#bronchiectasis #NTM
Why Reflux Matters
Some individuals manage acid reflux with antacids, alginates, or medications like Pepcid. Others may need proton pump inhibitors (PPIs) such as Nexium or Prilosec to prevent precancerous conditions like erosive esophagitis or Barrett’s esophagus.
However, the goal is often to minimize PPI use because stomach acid is needed to break down food and kill bacteria. Long-term use of these medications can cause nutrient malabsorption and bone loss. And, according to gastroenterologist Dr. Jeffrey King, lowering acid does not decrease reflux. Surprisingly, it can increase non-acid reflux.
Silent Reflux and LPR
Substances such as water, milk, or bile, which are alkaline, can also reflux into the throat and voice, causing symptoms such as a sore throat, drippy nose, and hoarseness. Even though these substances are not acidic, they can still reach the lungs and potentially cause tissue damage, chronic inflammation, and disrupt the lung microbiome.
Steps You Can Take
- Avoid eating several hours before lying down, exercising, and airway clearance
- Elevate the head of your bed
- Avoid trigger foods such as fatty foods, alcohol, caffeinated and carbonated drinks, and chocolate
- Manage stress and anxiety
These habits can help reduce reflux episodes and improve overall well-being.
Always consult your physician before making any changes to your treatment plan. Together, you can find the best approach to manage reflux and support your lung health.
However, Dr. McShane emphasizes that it is unrealistic to expect one drug to meet every patient’s needs. Instead, she encourages both clinicians and patients to view BRINSUPRI™ as part of a broader treatment plan that includes mucoactive agents, airway-clearance techniques, and, when appropriate, macrolide therapy.
Where BRINSUPRI™ Fits in the Treatment Landscape
For those living with nontuberculous mycobacterial (NTM) infections, where macrolide therapy may not be possible due to resistance concerns, a DPP-1 inhibitor such as BRINSUPRI™ could represent an alternative strategy to interrupt the ongoing cycle of inflammation, infection, and mucus dysfunction that drives bronchiectasis progression.
Evidence from the WILLOW Study
This suggests that BRINSUPRI™ could benefit patients with chronic bacterial colonization, one of the most challenging aspects of managing bronchiectasis.
The Importance of Multi-Mechanism Strategies
She emphasized that future therapies must also target airway-epithelial health, mucus viscosity, and host-pathogen interactions to achieve long-term improvement.
Dr. McShane also compared this approach to the multi-modality treatments already used for other chronic diseases such as congestive heart failure. Bronchiectasis, she argued, deserves an equally comprehensive and individualized model that combines medications, airway clearance, exercise, and infection control for the best outcomes.
Editorial Reference:
Author
Linda Cooper Esposito, MPH is a health educator with bronchiectasis. She developed the BE CLEAR Method to Living with Bronchiectasis and writes with compassion and humor about this chronic lung disease.
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