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A Coronavirus Update for the COPD Community

Posted on May 01, 2020   |   
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This article was written by Jamie Sullivan, MPH and reviewed by the COPD Foundation Medical and Scientific Advisory Committee (MASAC)


Updates from May 1, 2020

Yesterday we explored what we have learned about COVID-19 symptoms, risk factors and efforts to develop treatments and vaccines. Read on for updates on the efforts to reopen states, why people with COPD might have to wait longer and policy issues that we are following.

Reopening

Most public health experts suggest that it is much too early to reopen most of our country and have suggested several guidelines to use when making decisions about reopening. Efforts to “flatten the curve” have started to work and most public health experts feel that we have reached a plateau, meaning how fast cases are growing and daily increases in the number of deaths and hospitalizations have begun to level off. This does not mean we are out of the woods. Cases are still rising, and the virus is still spreading at a community level in most of the country. If we start to see areas where the percentage of tests that come back positive is declining and hospitalizations are declining, we will be more confident that the situation is improving.

There are some states that have already started to remove some restrictions on businesses and other activities. HOWEVER, it is likely that even when parts of the country begin to reopen, it will be necessary for people with COPD to continue preventive measures for quite some time. People in high-risk populations need to take extra precautions to avoid being exposed to COVID-19 and what level of risk political leaders feel is acceptable for reopening, is most likely not going to be acceptable for these populations. We will continue to monitor the situation and update recommendations as needed, but for the time being, we recommend that people with COPD continue to stay home whenever possible and practice strict preventive practices if they must go out, such as staying at least 6 feet away from others, wearing a face covering and gloves and washing hands often among others.

Policy Issues

All of us in the patient advocacy community are working hard to represent your needs with policymakers at all levels of government who can act to make changes that will help ensure our high-risk communities can stay safe at home and still access the care you need to manage your health in an affordable way. Many changes have taken place already. The Centers for Medicare and Medicaid Services (CMS) has vastly expanded the ability to receive care in your home, including paying for telehealth via phone or video, and by allowing you to receive infused and injectable medication in your home rather than having to go to a clinic. For those who use oxygen, they have also waived requirements for you to be seen in person when you start oxygen and again at the 12-month period. The recent CARES Act included a provision requiring insurers to cover a one-time 90-day supply to minimize trips out and included many financial relief policies that might be useful to you.

The speed with which these changes have taken place has been welcome news, but our job is not over. There are still urgent priorities that must be addressed to help keep you safe and deal with the long-term implications of this pandemic.

One of the most pressing concerns relevant to the COPD community is an effort to ensure people who have COPD and other high-risk conditions who work in jobs that are considered essential, such as healthcare workers, grocery stores and pharmacies, can qualify for paid leave policies in place during the COVID-19 pandemic. Unfortunately, as of now, there are no policies that would allow vulnerable populations to voluntarily take paid leave due to the danger they face by remaining in the workforce, and those that choose to protect their health and quit their jobs would not qualify for unemployment. As more states begin to reopen, protecting our population is even more important. The patient advocacy community recently sent a joint letter to congressional leaders and we will continue to push for this to be addressed.

We are also advocating to ensure you are protected from surprise medical billing and high out of pocket costs should drug shortages arise and you require a medication that isn’t traditionally on your plan’s formulary, or if you seek care for COVID-19 related concerns. Finally, we are joining the calls to urge CMS to cover virtual pulmonary rehabilitation and to empower respiratory therapists to provide services via telehealth. These are issues that would benefit the COPD community even in the absence of COVID-19, but they are made even more urgent in the current situation.

We know there are many more challenges you are facing that could be addressed by policy solutions at the state and federal level. We will continue to monitor and advocate on these issues in the coming weeks and months. Please check-in with the COPD Action Center if you are interested in getting involved or and share your thoughts on COPD360social.

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Categories: Coronavirus (COVID-19) Education, Resources and Studies

An interview with Diane Gregg, a person living with nontuberculous mycobacterial (NTM) lung disease

Posted on May 12, 2020   |   
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This article was written by Bret Denning, JD.


Diane L. Gregg is an individual living with NTM lung disease. She is a retired clinical social worker who spent her career working in various health care settings where she worked as a clinician and Director of Social Work and Human Services. Diane is currently working to complete a certificate program to become a mindfulness meditation teacher. She lives in the Chicago area with her two kitties and enjoys being a grandmother.

Thank you for talking with us today, Diane. Can you tell us more about your initial NTM lung disease symptoms?

I was diagnosed with NTM lung disease in early 2014. I began having symptoms a few months earlier. Initially I just felt extremely fatigued. I can't emphasize that enough. I had a hard time even making it home from work without falling asleep. This was very unusual for me because I'm a high energy person.

About six weeks after the fatigue started, I began coughing. It was an intermittent cough. I didn’t think too much about it until my friends and family began remarking, "Oh, you’ve been coughing a lot and it’s a really deep cough." Hearing that from them, and also getting pneumonia a few months later, made me decide to follow up with my doctor.

What tests did the doctors do to diagnose your NTM lung disease?

The first test the pulmonologist ordered was a chest X-ray. That test confirmed that I had pneumonia. I was told that the air sacs in my lungs were enlarged in what they called a “tree in bud” pattern, which indicated NTM lung disease.

I put off having a bronchoscopy for about six months because I had had a bad experience with a bronchoscopy many years before in another city. It just was scary to me. But I finally had a bronchoscopy, and that confirmed my diagnosis of NTM lung disease.

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Categories: Education, Resources and Studies Personal Stories Tips for Healthy Living

COPD and COVID-19: A Report from a Rural Community

Posted on May 07, 2020   |   
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This article was written by Kandy Blankartz, a COPD Foundation State Captain for the State of South Dakota. She wanted to share with the community about how COVID-19 has impacted her small town in rural South Dakota.


Hi, I am Kandy Blankartz, State Captain of South Dakota. I wanted to give you a little glimpse of how things are going here since I do live in a rural area of North Central SD. The town I live in is very small with a population of 3,465 people and am about 100 miles away from the nearest big city.

This COVID virus outbreak is very scary for us all but with those of us with underlining conditions such as lung disease, heart problems, diabetes, and cancer make it very hard to deal with. We have to take all the precautions and more for us to prevent this virus. I keep up on the news about this COVID virus for South Dakota every day especially for my county. We had 5 cases all in one family here in town. We all know them well. They have recovered -every one of them. So far, no other outbreak in this county, which is Walworth County. There are 2 close counties with no virus and one county which has 1 case reported and they have recovered. Hope we can keep it this way. It is a big worry for all of us in this rural community.

Life here has really changed. The officials here have closed inside dining places and restaurants only have drive-up. There was no prom for the high school. There still trying to figure out how to have graduation in May. The school kids are all doing schoolwork at home via the schoolteachers. This is really putting a strain on all of the parents and teachers. My daughter had to video chat a niece to help her with schoolwork. The grocery stores and dollar stores are open, but tape is placed on floor to keep everyone 6 ft apart. We have social distancing here with keeping 6 ft apart, and only 10 in a crowd, but I see no one in crowds. Now more people are wearing masks in public. My daughter is attempting to make some for family members. For me it’s very hard to wear a mask and breathe.

I think our medical clinic here is prepared and ready as best they can for this. I am worried the most about a big pandemic here. I think we only have a 25-bed hospital. You are to call before coming if you think you have the COVID virus. They come out and test you at your car. We got the new rapid testing machine from the state this last week.

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Categories: Personal Stories

Staying Active During Safer-at-Home

Posted on April 27, 2020   |   
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This article was written by Richard Casaburi, MD, PhD and Harry Rossiter, PhD


People who have participated in COPD360social cannot have escaped the message that maintaining activity is important in maintaining health. Pulmonary rehabilitation, one of the best therapies we have to offer for COPD, aims to encourage higher levels of activity in everyday life. We are now in the middle of a crisis in which one of the unintended and underappreciated consequences will be to reduce the level of daily activities in millions of people.

What are the consequences likely to be? We have clues from studies conducted years ago in which researchers studied the effects of 20 days of voluntary strict bed rest in young healthy subjects. Tests conducted before and after this 20-day period revealed that exercise capacity (the ability to perform high levels of activity) was reduced by about 30%. These subjects then went back to their normal lives, and normal activities. Interestingly, these same people had their exercise capacity determined 30 years later…when they were in their 50s. Their exercise capacity was about the same as it had been after 20 days of bed rest. The startling implication: 20 days of bed rest had the same detrimental effects as 30 years of ageing!

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Categories: Coronavirus (COVID-19) Tips for Healthy Living

Exploring the COPD Patient and Caregivers Experience with COVID-19 through Surveys: Highlights from Survey #1

Posted on April 22, 2020   |   
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The article was written by Ruth Tal-Singer, PhD, Delia Prieto, BSEd, MSEd, Vincent Malanga, BS, MCP, Bill Clark and Danielle Boyce, MPH


COVID-19 Survey Results | COPD360

The COPD Foundation “COPD360” approach mobilizes partnerships between patients, caregivers, healthcare professionals, researchers, academic institutions, government agencies and industry leaders with a common mission of preventing COPD disease progression, and improving the lives of those affected. The COVID-19 pandemic has put individuals with COPD and other comorbidities at a high risk for poor outcomes, so the COPD Foundation is focused on keeping the community informed on emerging developments. COPD360social is serving a critically important role in our communications with the COPD community about COVID-19 and the specific needs and risks that may be faced by the individual with COPD.

Between March 29th and April 13th, we launched the first of a series of global surveys that aim to evaluate the experience of COPD patients during the COVID-19 pandemic. The survey was promoted via COPD360social and other COPD Foundation resources. Below is a first look at some of the data.

  • A total of 566 COPD360social members responded, including 513 COPD patients (332 former smokers, 67 current smokers and 37 never smokers), 12 caregivers, 18 healthcare providers, and 14 family members or individuals with asthma).
  • Bronchiectasis was reported by 98 of the participants (2 without COPD)
  • 177 COPD participants experienced an exacerbation in 2020
  • 16 participants (3%) were told they had COVID-19 by a healthcare provider. Of these 16 participants, 6 of them were actually tested for COVID-19 and only 2 of them received positive test results confirming the COVID-19 presence. Additionally, 2 of them were hospitalized for over a week.
    This number is consistent with other data showing that the incidence of COVID-19 is not higher in people with COPD, but the outcome (hospitalization) is worse. The results suggest that testing is underutilized in this at-risk population.

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Categories: Coronavirus (COVID-19) Education, Resources and Studies

COPD and COVID-19: A View from Florida’s Retirement Communities

Posted on April 18, 2020   |   
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This article was written by Pam DeNardo, a COPD patient advocate and part of our COPD Foundation team. If you are interested in sharing your stories about living with COPD during the COVID-19 pandemic, please email us at statecaptains@copdfoundation.org.


I am a semi-retired single woman living in a 55 and over retirement community of over one thousand units in a village like setting in Fort Myers, Florida. The social activities here are many and well attended. Golf Course, six pools, tennis courts and gym to name a few. We even have our own restaurant. So, you can imagine it's pretty lively here. Until recently. I look out my windows now and see no one. In the early mornings and just before the sun goes down you will see people walking and keeping safe distances. It's a little comical as everyone wants to talk but they have to holler at each other in order to be heard.

Usually at this time of year the snowbirds leave, and the community slows down. This year however, the northerners don't want to go home. Especially if they come from a "hot spot". Now that Florida's numbers are climbing that may change.

As a COPD patient of 20 years I am pretty resilient and I am used to some isolation. And working with the COPD community I have been pretty much oblivious of how others with different physical problems cope. Since the pandemic I have seen some incredible acts of humanity and kindness and am amazed at how we can make this work socially. On my birthday some of my neighbors put a cake by my front door and sang happy birthday from the street. I will be in the next group for the next birthday.

I have had to adjust how I shop. Drug stores are no problem as I order online (or doc calls it in) they tell me when to pick up and I use drive up. Grocery stores are a little more difficult. At first, I tried to shop in person as usual. Waiting to get in, trying to keep 6 feet of distance, (especially while others were not), wiping things down before I picked them up, checking out and finally going home only to have to wipe everything down again before putting away. I found all this exhausting and needed a nap.

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Categories: Coronavirus (COVID-19) Personal Stories

Ted Koppel Talks Nightline, COVID-19 and Its Impact on Those with COPD

Posted on April 17, 2020   |   
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Forty years ago, Ted Koppel was chosen to host Nightline, a television show focusing on a growing international story: the Iran hostage crisis that gripped the nation for 444 days. As he recently looked back on that time in an interview with ABC News, Koppel compared it to the current COVID-19 crisis and how the virus is affecting the COPD community. His wife, Grace Anne Dorney Koppel, has lived with COPD for nearly 20 years. She previously served as the Interim President and Board Member of the COPD Foundation and she and her husband remain fierce advocates for individuals with COPD and their families.

COPD is an umbrella term that includes emphysema and chronic bronchitis. In the interview, Koppel emphasized the need for more attention to COPD and connected for viewers how COVID-19 is particularly relevant to those living with COPD. COPD is a respiratory illness that kills more than 155,000 Americans every year and COVID-19 is a disease with substantial impact on the lungs. Koppel states that there may be no group more vulnerable to COVID-19 than those people affected by COPD.

He noted that many people only begin to take a public health threat like COVID-19 seriously when it affects someone close to them and that people will, as the weeks and months pass and more people are impacted, “wake up” and attend to the evolving threat. He stated that more people will be directly affected as the virus spreads; he hopes that the country will understand how serious and how damaging this virus is and take steps to prepare and act accordingly.

Koppel pointed out that unlike the Iranian hostage crisis, the crisis of COVID-19 more directly impacts the daily lives of the American people. He also focused on the importance of individuals seeking out high-quality, trusted information regarding COVID-19 and the necessity for journalists to do be able to provide factual information to the population. Too much false information is being spread, Koppel states, particularly over the internet. Now is the time to not only respect but to reinforce the legitimacy of the media and the important role they play in our society.

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Categories: Advocacy Community Announcements Education, Resources and Studies

Sheltering in Place While Living with COPD

Posted on April 06, 2020   |   
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This article was written by John Linnell. John is a COPD Patient diagnosed in 2005 and left the workforce in 2011. After being involved in an internet awareness film and sharing his story, John decided his efforts would be best spent doing advocacy work for the COPD community. John is a member of the Board of Directors for the US COPD Coalition and is a COPD Foundation State Captain for Wisconsin. He also serves on the Executive Board of Directors for EFFORTS (an international support group for COPD) as well as on the Governing Board for the COPD PPRN (Patient Powered Research Network) for PCORI.

As a COPD patient and patient advocate, the current COVID-19 pandemic brings to mind so many thoughts, tips for fellow patients, and yet hope for us all.

My initial thought, a few weeks ago, was “Well, welcome to my world”. The COPD patient has always had to be cautious and protect against respiratory infections. It’s how we live. Now, the entire world is having to. Then, I realized that this was an incredibly selfish thought. Why would I want to “welcome” anyone to this type of life? So, it became a moment of teaching and sharing! Here are some tips to help us get through this most unusual time - tips for all of us, not just those with respiratory issues such as COPD:

  • Stay home - Just stay home whenever possible. I am finding it a good time to catch up on the many “to-do’s” that keep getting put on the back burner. It’s a great time to work on a hobby. For myself, I like to cook and have made a wonderful Chocolate Ganache Tart, a loaf of Amish Sweet Bread, a new recipe for Chicken Fettuccine Alfredo, and some Coconut Shrimp. It also was the perfect occasion to clean out the freezer (you do not want to know what all was found).
  • Arrange in advance (now) for friends/family to be able to run errands for you should need be. This will get worse, and it may be unsafe to leave your home...period. While not wanting to put others at risk, it may be safe for them but not for you. Nonetheless, it is a conversation best had now and not later.
  • When possible, order refills of medications you may be taking, especially inhaled medications. Pharmacies might be willing to refill a little time before the refill is technically due. (I say this with hope, not with foreknowledge.) Check on your levels of other needed supplies. Don’t buy the shelves bare but do have enough for a month or so. The supply chain is still working. Toilet paper is still being manufactured.
  • Stay active!! You can still go for walks, take the dog out, get some fresh air. Do so only when not in densely populated areas and be sure to maintain distance from others that are hopefully outdoors doing the same. This “sheltering in place” should surely not be taken as a directive to just sit on the couch and watch every single rerun of I Love Lucy (although, I do love Lucy). This is especially directed at those of us with respiratory diseases. Inactivity is a slippery slope, indeed. “The Less We Do, The Less We Are Able to Do” No treadmill? Then walk in place if you can’t or shouldn’t go outside. There are also many online pulmonary exercise options that are currently being provided at no cost in order to help us through this!!
  • Practice “physical distancing”. I personally do not like the phrase “social distancing”. We need to be social; we need each other now more than ever! We simply need to be physically apart…...but we must be social to maintain our sanity. Be a friend! Maybe this is a good time to make a phone call to that old buddy or friend that you had been thinking about. Don’t text,,,call them!! Reconnect. Be social. You can take the lead and make this first step. I did, and it was so fun reconnecting and sharing memories.
  • Consider practicing Mindful Awareness, meditation, yoga, or getting lost in a good book. Whether you like it or not, you certainly now have the time to do just that.
  • Keep somewhat of a schedule, lest you get lost in the day and wind up accomplishing nothing. Have set mealtimes. Set aside times to read, meditate, or just relax. Hold yourself accountable for getting your daily goals accomplished so as not to fritter away the day. Even for those of us that already are homebound due to our COPD or other respiratory condition, this can be an awakening - Do we really make the best use of our time? For myself, I have learned a lot and changed my pattern. I get more done, yet I somehow seem to have more “me” time.
  • Get and/or stay involved with peer support groups on social media. You need the ongoing support as well as the other members are needing you as well. They worry about you and welcome your participation. You count, so be present for them. One excellent group is the COPD Foundation’s COPD360Social
  • Advocate!! You still have a voice, and now you certainly have the time. Write to your legislators, both local and Federal, asking for their support in: - asking CMS to waive formulary restrictions on inhaled medications; - ask CMS and Congress to allow at least a temporarily allowing RRTs (respiratory therapists) to be able to practice via telehealth, home visits, and relaxing the supervisory requirements under Plan B. (You can access the full request from the US COPD Coalition)

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Categories: Coronavirus (COVID-19) Personal Stories

Use It or Lose It!

Posted on March 30, 2020   |   
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This blog post series is intended to give you ideas to help you get active and stay active – even during social distancing. The COPD Foundation wants to help you maintain your physical and emotional health during this difficult time. We decided that we would look to conversations on COPD360social to see what the community is interested in. The topic of exercise and pulmonary rehab came up again and again, and we decided to take this subject on.

You know that old saying, "If you don’t use it, you’ll lose it."? Exercise is one of those things that you have to do frequently and routinely, or you will lose endurance and stamina. If you are a person who does regular exercise, you may be looking for things you can do at home to keep your routine going. Or you may be someone who is looking for ways to stay active and busy during the day. Either way – getting active and staying active is extremely important for your health.

Now, before we get this series started, we must remind you to get approval from your doctor or health care team before starting any new kind of exercise/activity. But once you get that approval, find something that you like to do and make a habit out of it. What kind of exercise should you do? That is a great question – let’s look at the different types of exercises.

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Categories: Coronavirus (COVID-19)

Teaching with a Twist – Quitting Smoking: Why should you?

Posted on March 13, 2020   |   
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Quitting smoking. It is a subject that triggers a variety of reactions from people when you bring it up. Some people get defensive, some get argumentative, and some seem to appreciate the concern behind the question. I know this because I am one of the annoying people who will bring it up. If you have been on COPD360social a while, or if you have read other things I have posted, you might know that I am a respiratory therapist with many years of experience in caring for people in the hospital, pulmonary rehab, skilled nursing facilities, and as part of a home care team. In each of those different settings I brought up the topic of quitting smoking. And even here, on this forum, I’m doing it again.

Let’s start off by doing a little level setting. I am not going to spend time talking about the reasons you should quit – damaging your lungs, increased risk of cancer, or heart disease. If you are an adult human who has lived in proximity to the news or other media, you already know all of those things about smoking. For your own reasons, those reasons alone are not enough to motivate you to quit. So, let’s move to another level of motivation.

If you were in one of my smoking cessation classes, I would ask you why you keep trying to quit smoking. What keeps drawing you back to the notion to quit? Write that reason(s) down. Now think about why you still smoke. Think it through honestly and write it down, too. You don’t need to show these reasons to anyone – they are personal. Do you believe smoking is a habit that you can quit, or do you think it is an addiction? Several years ago, I found a simple test that can help answer that question. It is called the Fagerstrom Test and a link to it can be found here. Once you determine if you are dealing with a habit or an addiction, it can help you talk to your doctor about a plan to quit. Go ahead and take the test and score before reading on.

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Categories: Education, Resources and Studies Tips for Healthy Living

Let’s Talk About Nontuberculous Mycobacterial (NTM) Lung Disease

Posted on March 09, 2020   |   
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This article was written by Bret Denning, JD.


How much do you know about NTM lung disease – a disease that is becoming more common in the United States – and how it could affect people living with other chronic lung diseases such as COPD or bronchiectasis who are at greater risk of developing the condition? Learn this and more from the COPD Foundation’s one-hour Let’s Talk About NTM Lung Disease webinar recording. Topics include how to identify signs and symptoms of NTM lung disease and limit exposure to the bacteria that causes this condition.

We were joined by two very special panelists, Dr. Ashwin Basavaraj of Bellevue Hospital Center and NYU School of Medicine, and John Torrence, an individual living with NTM lung disease and bronchiectasis. Dr. Basavaraj provided an overview of the disease, including symptoms, risk factors, diagnosis and treatment. Mr. Torrence offered insights on his experience with NTM lung disease and provided tips on advocating for yourself and what has made for a collaborative relationship between he and his healthcare team. The webinar ended with an opportunity for attendees to ask questions of the two speakers.

Watch the Webinar Recording

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Categories: Education, Resources and Studies Events

Women and Bronchiectasis

Posted on March 04, 2020   |   
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As we celebrate International Women’s Day, we turn our attention to how bronchiectasis uniquely affects women and the impact that has on gender equality in healthcare and what can be done.

As we noted in a previous blog post, bronchiectasis is often difficult to diagnose because it can have similar symptoms to COPD, and some people have both COPD and bronchiectasis. What researchers do know is that bronchiectasis can have a more significant impact on women than on men. Studies have shown that women are more likely to develop bronchiectasis at an earlier age and may have more severe cases of it affecting health and, a poorer lung function.

Why does bronchiectasis affect women more than men?

Some of the reasons are simply physical. Women generally have smaller lungs and therefore smaller airways, which could have an impact on mucus production and ability to clear mucus from the airways. Additionally, some research has shown that certain female hormones affect airway disease activity, although the exact reason is still not known.

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Categories: Advocacy Community Announcements Education, Resources and Studies

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