Discussions

Clinical Research Studies are closely monitored by physicians, regulators, and data safety monitoring boards. It is important to review the details of the Informed Consent Form given to you by the research staff members and ask questions before signing it. You are not required to continue with the study if you decide to withdraw after starting it. Your involvement can help develop new drugs and treatments for the community.

Current research studies are posted on the BNTM Association 360, https://www.bronchandntm.org/For-Patients/Participate-in-Research/Research/Participate-in-a-Study. The current listing includes:  The AIRTIVITY® Study is looking to see if an investigational medicine – designed to target the harmful inflammation that contributes to bronchiectasis – can help improve the lives of people living with the condition. To find out how to take part in this clinical trial, please visit https://airtivity.researchstudytrial.com/?r=9

How do I find other clinical trials?  www.clinicaltrials.gov

If you have any questions, please call the Bronchiectasis and NTM Information Line: 1-833-411-LUNG (5864) or email contactus@bronchiectasisandntm360.org

Clinical trials are done to test treatments or therapies for specific diseases such as NTM and bronchiectasis. These trials help us to understand what works and what does not. Clinical trials challenge current treatments or standards of care for the advancement of care. Suggested questions to ask before beginning a research trial:

Participation

• What is the purpose of the trial?

• How will this treatment be different from what is currently being used?

• How long will I be in the trial?

• How many visits will I need to make to the hospital or clinic?

• What kinds of tests and treatments are involved?

• How will the doctor know if the treatment is working?

• Who will oversee my care?

• Who can answer questions I have during and after the trial?

Risk and benefits

• What are the possible side effects or risks of the new treatment?

• What are the possible benefits?

• How do the possible risks and benefits of this trial compare to those of the current treatment?

Rights and costs

• How will my health information be kept private?

• If I decide to leave the trial, what other options will I have?

• Who can help answer questions from my insurance company?

• Are there any out-of-pocket costs if I take part in the trial?

• Are there payments for participating or to cover travel?

Please let us know if you have any questions.  I will continue to post more information on clinical trials throughout the week. Please stay tuned. :)

Hi! I'm 82. Have had bronchiectasis for probably 40 years. Hemoptysis 4 times: 2009, 2017, 2026 (2 x's). Am considering – seriously – BAE (Broncial Artery Embolization) and would LOVE to hear from anyone with experience with this procedure. I had a consult today with a UNC Interventional Radiologist who would perform the BAE. 

Participating in a clinical trial helps researchers address important questions and learn more about NTM lung disease and bronchiectasis. It also contributes to better, safer, and more effective treatments. There are four phases carefully designed to study participants in a clinical trial to evaluate the safety and effectiveness of new drugs, medical devices, and treatments. Below is a summary of what occurs at each phase of a clinical trial.

• Phase I – Explores whether a treatment is safe in a small group.

• Phase II – Evaluates whether a treatment is useful in a larger target population. Researchers continue to monitor safety and assess how well the treatment works at different doses.

• Phase III (registration) – Explores how the new treatment compares to existing treatments and side effects in a much larger group. This phase also evaluates the new treatment’s effectiveness, safety and correct dose. Information from Phase I-III is used for U.S. Food and Drug Administration (FDA) approval and regulatory agencies in other countries.

• Phase IV – Monitors long-term safety, interactions with other medications, and efficacy in real-world use.

Clinical trials take time to complete, and the enrollment process can be slow due to limited eligibility. Trials begin with pre-screening, followed by obtaining informed consent from participants. Informed consent confirms your knowledge of the procedure or treatment, possible risks, and benefits. Individuals may undergo screening for eligibility for a specific research study. If approved, the participant can enroll in the study. Monitoring for safety occurs throughout and after the study concludes.

Have you participated in a clinical trial? Would you like to share your experience with the community?

My bronchiectasis results in constant coughing and spitting up of phlegm 24/7.   I feel like I have a continuous head cold.   Do I still need to do airway clearance since the problem seems to be in my sinuses?   I spit up a lot of mucus/phlegm all day long so I don’t want to produce even more by doing airway clearance.   Please  enlighten me….

My mom is care giver for her sister who has bronchiactesis, long standing, with bleeding from lungs. Now my mom has some symptoms of bleeding from lungs, etc, and doctor has diagnosed her with the disease. Is it possible that bronchiactesis is communicable, and can be passed to another individual?

💙 Hope Starts with Knowledge.

For individuals and caregivers living with BNTM, learning about clinical trials can lead to better outcomes by giving eligible participants access to promising investigational therapies under careful medical supervision.

Participation is always voluntary, and every study has specific eligibility criteria. The best first step is to talk with your healthcare team to see whether a clinical trial may be right for you.

Every breakthrough in medicine begins with people who choose to advance research. Patient involvement helps researchers better understand the disease, identify unmet needs, and develop treatments that reflect what matters most to those living with BNTM. Whether you participate or simply help spread awareness, you are contributing to a future filled with more hope and more treatment options.

Progress happens because of a community that shows up, supports one another, and believes that better treatments—and brighter tomorrows—are possible. Together, we're moving science forward—one step, one study, one patient at a time. I will be posting information on clinical trials and current trials throughout the week.  Please stay tuned and let us know if you have any specific questions on clinical trials.💙

Hello! I hope that you have been able to enjoy some beautiful summer days. Below is a link to a blog article on Summer Precautions for Bronchiectasis and NTM individuals. The article reviews water precautions- the latest update is to boil water for at least 3 minutes after it begins to boil. Please let us know if you have any questions.https://social.bronchandntm.org/articles/blog/Summer-Precautions-for-People-with-Bronchiectasis-and-NTM-Lung-Disease

💙 As a part of Therapeutic Recreation Week, it is recommended to get involved in your local community.  Living with bronchiectasis or NTM lung disease can sometimes feel isolating, but connecting with your community can help build friendships, purpose, and support.  Do make time for connection- other people will learn to understand you over time, and your need to cancel or postpone an event as needed.

✨ Ways to get involved in your local area:

✅ Volunteer with a local nonprofit or community organization

✅ Attend library events, workshops, or book clubs

✅ Participate in community recreation or wellness programs

✅ Visit local parks, community centers, or senior centers

✅ Connect with faith-based or civic organizations

✅ Attend health fairs and community education events

Remember, involvement doesn't have to be big to be meaningful. Whether it's attending a monthly meeting or volunteering for an hour, small connections can make a big difference. Community reminds us that we are stronger together. Every connection is an opportunity to learn, grow, and support one another.  Do you want to share your experience with a community group in your area?

Just joined this group. I was diagnosed with BE a couple of years ago during a hospital stay for pneumonia. That year, I had about 4 bouts of pneumonia which I think contributed to my diagnosis. Prior to that I had coughing when i changed positions in bed or when I had a cold.  I was having lots of coughing and throat clearing at the time of my pneumonias. I think I have silent reflux, which makes it difficult to manage my BE. I’m starting to watch my diet a little more, taking reflux gourmet at night when I need it, and doing hypertonic 3% nebs twice a day. Any suggestions how to manage both issues? I’m 70, 4 grandkids and am pretty active. Thanks. 

☀️ Summer may bring some hot and humid days, but that doesn't mean the fun has to stop by any means! If you're spending time indoors to stay comfortable, it's a great opportunity to explore a new hobby, get creative, or revisit an old favorite. Here are a few places to spark your creativity and keep you engaged:

🎨 Michaels – The largest nationwide arts and crafts retailer, with supplies for painting, knitting, Cricut, floral, framing, and more. Find everything from painting and knitting supplies to Cricut materials, floral crafts, framing, and so much more. https://www.michaels.com/

🧶 Hobby Lobby –A large craft and home décor chain with a wide range of craft materials. Browse a wide selection of arts and crafts supplies, DIY projects, and home décor inspiration. https://www.hobbylobby.com/?msockid=0ca9b0b92ddf6727275ca33b29df6150

 🚂 HobbyTown – Perfect for model kits, RC vehicles, trains, tabletop games, puzzles, and other specialty hobbies.  https://www.hobbytown.com/

Whether you're creating something beautiful, building a model, or simply enjoying a relaxing afternoon with a favorite pastime, staying engaged can make indoor days just as enjoyable.  Do you have a favorite hobby that you would like to share with the community? 💙

Throughout National Therapeutic Recreation Week, we encourage our bronchiectasis and NTM community to look into courses that can improve their quality of life. Self-care means celebrating what I can do today, not comparing it to yesterday. 💙 I may need to pace myself, but indoor courses such as the one below help me stay connected to my personal/professional goals.

Coursera offers hundreds of free online courses across diverse subjects, with options to access course content and, in some cases, earn certificates at no cost. Coursera allows learners to start free courses in two main ways: by previewing the first module of many courses, which includes video lessons, readings, and graded assignments, or by starting a 7-day free trial for Specializations or Coursera Plus. Check out the link below if you are interested in learning something new and exciting.  Have you attended any of the Coursera classes?

https://www.coursera.org/courses?query=free

Living with bronchiectasis or NTM lung disease doesn't mean putting fun on hold. Indoor activities can help support physical, mental, and emotional well-being while providing opportunities for relaxation and connection. We are reminded throughout National Therapeutic Recreation Week that staying active indoors can help support strength, flexibility, and overall well-being.

🏡 Indoor Activity Ideas:

✅ Chair yoga or gentle stretching

✅ Deep breathing and mindfulness exercises

✅ Arts and crafts, painting, or coloring

✅ Reading or joining a virtual book club

✅ Puzzles, crosswords, and brain games

✅ Indoor gardening with houseplants or herbs

✅ Cooking or trying a new healthy recipe

✅ Music, dancing, or learning an instrument

✅ Take short walking breaks around your home throughout the day

✅ Stretch gently in the morning or before bed

✅ Try chair exercises or low-impact fitness routines

✅ Use household chores as opportunities to stay active

✅ Set small, realistic movement goals each day

✅ Stay connected through virtual classes or support groups

✅ Listen to your body and pace yourself as needed

Every movement matters. Even a few minutes of activity can make a positive difference in your day.✨ Celebrate what your body can do.  Every activity is a chance to connect, move, create, and recharge. Staying active indoors helps me maintain both my physical and emotional health. It's one of the ways I take care of myself while living with BNTM lung disease. 💙 Which of the above indoor activities brings you joy?

National Therapeutic Recreation Week in 2026 is observed from July 5th to July 11th. National Therapeutic Recreation Week has been celebrated annually since its establishment in 1984 by the National Therapeutic Recreation Society. The week is dedicated to raising awareness of therapeutic recreation programs and services, which aim to improve the health and well-being of individuals with physical, mental, and emotional disabilities. Diversional recreation activities assist us to go forward and to make the best of every day. We encourage our bronchiectasis and NTM community to share recreational activities that help you feel your best. Please comment below.

🌞 July has arrived, kicking off with a very active World Bronchiectasis Day yesterday. As the summer heat rises, so does our commitment to caring for ourselves and one another in the Bronchiectasis and NTM community. For those living with Bronchiectasis or NTM lung disease, rising temperatures can bring extra challenges.

🌞 July Heat & Lung Health Reminders:

💧 Hydrate often, even before you feel thirsty. Staying well hydrated helps thin mucus.

🌤️ Protect your lungs from heat, humidity, and poor air quality.

✔️Avoid outdoor exertion during peak heat (10 am–4 pm). Avoid hot, humid air.

✔️ Check local air quality before going outside; check the dew point numbers.

✔️ Use air conditioning or cooling centers when possible

🌬️ 🩺 Stay consistent with care routines- keep up with airway clearance.💙 Permit yourself to rest as needed

Small daily choices can help protect your lungs during the summer heat. If symptoms increase—more coughing, fatigue, or breathlessness—reach out to your healthcare provider early. Throughout the month, the BNTM Activity Feed will focus on therapeutic recreation ideas, clinical research, and a review of summer weather conditions. Stay cool and stay kind to your body this July. 💙 Here’s to a July filled with strength, gentleness, and resilience.

Hello! As the outdoor temperature rises, so does the chances of getting a heat related illness. Knowing how to recognize the symptoms of heat exhaustion and what to do can protect you and those around you is of utmost importance.The blog article below reviews heat exhaustion, heat stroke and treatments. Please let us know if you have any questions. Keep cool 😎. https://social.bronchandntm.org/articles/blog/Heat-Stroke-and-the-NTM-Bronchiectasis-Patient

Hi Everyone, 

Just wondering if there is a better climate to live in for people with bronchiectasis. I was diagnosed with it 20 years ago. Since then I have gotten Mac and Abscesses. I am clear of the Abscesses but might have Mac again. I grew up in Louisiana but moved to Western Washington 20 years ago. I cough all the time. I can't seem to stop it these days. It is wearing me out. I am exhausted and getting depressed. 

I'm wondering if a change of climate would do me some good. I never liked the weather here. I wonder if New Mexico would be better for me. 

I like to be active and outdoors. I have horses and dogs. I like to bike and hike. 

Any thoughts out there? 

Tomorrow, July 1st, we celebrate World Bronchiectasis Day. As I reflect on this special day, I can't help but think about how much has changed over the last 10 years. A decade ago, hardly anyone had even heard the word bronchiectasis. Many of us felt alone, misunderstood, and searched endlessly for answers. Today, because of patients, caregivers, researchers, physicians, and advocates around the world, there is real momentum—and real hope.

I had the privilege of attending the recent World Bronchiectasis Conference in Germany virtually. Listening to the brilliant presentations from experts across the globe reminded me that we are living in an exciting time. The passion, collaboration, and dedication to improving our lives were inspiring.

This year marks the 5th World Bronchiectasis Day, and more than 30 organizations around the world are coming together to raise awareness and give a stronger voice to our community.

Just think about how far we've come. 

We have increased awareness around the world. We have a growing network of specialized Bronchiectasis and NTM Care Centers throughout the United States. We now have Brinsupri, the first medication developed specifically for bronchiectasis. And for the first time, we're even seeing television commercials on bronchiectasis, featuring Ty Pennington reminding people that our lungs are the foundation of our health—just as the foundation is to a home.

I hope you are feeling well today. If not, I want you to hold on to Hope, realizing that more research is underway and many new treatments are around the corner. I made it through some of my most difficult respiratory challenges. Believe that better days are possible. You are stronger than you think, and you are not walking this journey alone.

Research is moving forward. New treatments are on the horizon. Together, we are building a future where bronchiectasis is recognized earlier, treated better, and one day, perhaps even prevented. I hope you'll be able to join one or more of the World Bronchiectasis Day events tomorrow as we continue to raise awareness, support one another, and look toward an even brighter future. https://social.bronchandntm.org/events
Happy World Bronchiectasis Day Eve! :) 

I have just purchased  Aqua Medix for my shower and kitchen sink, but want to cut off the pseudomonas at my bathroom sink also.   My bathroom faucet doesn't have removable hardware.   I need an under the sink unit to filter out or heat the water to over 140 degrees.  Any suggestions?

Pharmacies are known for giving long patient instructions with each prescription that you purchase.  Some healthcare professionals take the time to review potential adverse effects when prescribing medications; others do not. Many individuals can tolerate antibiotics, while others cannot. Drug tolerability is based on many factors- your healthcare provider must be informed of all current drugs and supplements that you are taking. Below is a basic review of things to be mindful of while taking Levofloxacin and Moxifloxacin.

• Levofloxacin and Moxifloxacin can cause inflammation of tendons. If you experience “joint pain” while taking these medications, it is probably a sign of tendon inflammation, and the antibiotic should be stopped.

• These drugs can also cause abnormalities in the heart conduction system, known as the prolonged QT interval. It is a good practice to have a baseline EKG in your medical files so you can use it for a comparison if you should experience any issues.

• These drugs have a “caffeine effect” and can interfere with sleep. Reducing or eliminating caffeine while taking this drug will result in better sleep.

• Do not take within 2 hours of dairy, antacids, or vitamin and calcium supplements.

Have you had a negative side effect with these drugs that you would like to share with the community? 

I am new to this diagnosis and would love to see how many usually do the medications and what can you suggest for nutrition tips?  Any information or places to look on this site would be appreciated.  I have not watched all the educational resources yet.  Thank you!

World Bronchiectasis Day is one week away! Help us spread awareness on social media. Visit our profile on Facebook or LinkedIn, where you can scroll through recent posts. Click like, comment, and share to increase visibility and inform your friends and family about the impact of this chronic lung condition. 

You can also sign up to receive our free toolkit, which includes images and descriptions you can post on your own social media account. Simply download the graphics, then copy and paste the text into your social media post.

The toolkit also includes information about World Bronchiectasis Day events, including free webinars hosted by the Bronchiectasis and NTM Association, along with our global partners. Learn more about symptom management, nutrition, and more while connecting with the worldwide bronchiectasis community. 

Fill out this form to receive the free World Bronchiectasis Day 2026 toolkit in your email inbox: https://copdf.co/WBD-toolkit  

Where would I look to see what others do for shower head replacements or cleaning and drinking water? Thank you!

Can anyone explain to me why many of the prescriptions, such as inhalers list as a side effect “upper respiratory  infections” or “pneumonia”.  Isn’t the reason we are taking these medications to avoid such conditions?  Also can anyone tell me what inhalers really works well for them?  Insurance doesn’t cover many of them. 

Are you familiar with the drug Clofazimine?  Clofazimine is used for the treatment of some strains of NTM infections. Common side effects include stomach upset in some individuals and gradual skin tanning. The skin discoloration will begin to fade once the medication is discontinued. A baseline EKG and periodic repeat testing should be done while on this medication. Clofazimine is not commercially available in the U.S. for NTM infections. Access is through Novartis‑sponsored expanded access programs or FDA‑authorized SPINDs, with strict eligibility, documentation, and manufacturer cooperation requirements. Your healthcare provider will get this approval process started for patients in need of this drug.  Have you taken Clofazimine? If yes, do you want to share anything with the community about this drug?