This article was written by Bret Denning, JD.

What does it mean to be an advocate? That’s an interesting question that can have several different answers. For some, it means working to help others through education and outreach. Advocacy is not something out of reach – it simply means to make people aware. The COPD Foundation wants to help you recognize that as someone living with COPD, you have a voice that needs to be heard in whatever way is most comfortable for you.

In this video, Become a COPD Advocate and Make and IMPACT!, Stephanie Williams, Senior Director of Community Education Programs at the COPD Foundation, had the opportunity to speak with John Linnell, a state captain from Wisconsin. As a state captain, John is one of our most passionate advocates and is always willing to lend his voice in any efforts to help the COPD community. He believes that it is critical for the patient voice to always be heard. John wanted to share his story of how he became a COPD advocate and what it means to him. After being forced to leave the workforce due to COPD, John realized he had two options: sit home and "be that old man with a hose in your nose" or get involved and help educate others through their journey. He knew how challenging his own journey was and helping others overcome barriers like the ones he faced was an enlightening experience for him. It was a desire to speak on behalf of others that brought him together with the COPD Foundation and our State Captains program. John wanted people to know that even if there is no cure for COPD right now, the disease is not a death sentence and that there is so much that can be done. How anyone deals with their COPD is completely up to them. John rejected the "woe is me" approach and decided to not only live with it but work every day to help others. To him, that is the point of advocacy—let your voice be heard!

As a COPD advocate, John wants others to become involved! He emphasized that there is not a "one size fits all" approach to advocacy and that people can find what makes them the most comfortable, from handing out literature at a health fair or participating in a conference to speaking with pharmaceutical representatives or members of Congress. John gave an example of a friend who was not comfortable with public speaking but was a powerful advocate through social media. The question thus becomes, how does one become a powerful advocate? This is where IMPACT comes in.

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This article was written by Bret Denning, JD.

The COVID-19 pandemic has certainly been a source of worry for people around the world as we all adapt to wearing masks in public, social distancing and for a while, simply isolating ourselves from the rest of society. For people living with COPD, the pandemic brought its own set of challenges and concerns. People had, and still have, questions such as how the virus can affect their lives and health or if they are more vulnerable to the virus. As people struggle to find a new “normal,” they can often get overwhelmed with the new changes in their daily lives.

From the onset of the pandemic, everyone at the COPD Foundation has sought to keep our community informed and up to date on the latest news related to COVID-19 through webinars, surveys, Facebook Live events and blog posts. Our COVID-19 information page is filled with critical information for anyone living with COPD who has questions about the virus.

We would like to share another valuable resource with you. Our friends at EveryDay Health have put together this Guide to Living with COPD During the COVID-19 Pandemic that is filled with helpful information for anyone affected by COPD who has questions or concerns related to the pandemic.

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This post was authored by Jane Martin, BA, CRT

This is the final in a series of four blog posts on nontuberculous mycobacterial (NTM) lung disease. Thank you to Made Pramana for sharing the patient perspective in this post.

In the first three blog posts, we learned about NTM lung disease, what it has in common with COPD, what causes it, how it is diagnosed, and how it is treated and managed.

• NTM Lung Disease: What it is and What you Need to Know
• NTM Lung Disease: How it is Diagnosed and What you Need to Know
• NTM Lung Disease: Treatment and Management and What you Need to Know
• See also: An interview with Diane Gregg, a person living with nontuberculous mycobacterial (NTM) lung disease

Now let’s look at support resources for people impacted by NTM lung disease and/or bronchiectasis. We will also talk about research.

When a person has been diagnosed with NTM lung disease and/or bronchiectasis, it is of course important to learn from doctors and other health care professionals. These professionals can help individuals with NTM lung disease learn about the physical aspects of the disease and how to stay as active and well as possible despite these diseases.

In addition, it’s essential for the person diagnosed with NTM lung disease and/or bronchiectasis to know where they can find ongoing education, emotional support, and encouragement. Some of this support can come from peers – those who have been diagnosed and are living with the disease every day. Family members and caregivers of those with NTM lung disease and/or bronchiectasis can also benefit from this education and support.

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This article was written by Jamie Sullivan, MPH

Hi Friends,

Earlier today I sent the below message to our State Captain Network, but I wanted to share it with you as well. I consider all of you as part of our extended family of advocates and champions for the community and I am so grateful for all that you do to support each other and for how you support the COPD Foundation team. It is very bittersweet to post this but rest assured it is not goodbye for good, I am an honorary member of this community for life and will always carry your voices forward in my work.

Dear State Captains,

Sixteen years ago I was a college student in Miami staring at a job board I saw on a walk across campus when my eye caught a listing for an off-campus work-study position for a place called the Alpha-1 Foundation. The prospect of working somewhere other than a campus office filing and answering calls was thrilling but little did I know this chance walk by the job board would shape the rest of my life in the way that it has.

Over the next decade, I was privileged to learn from the best. John Walsh, the founder of both the Alpha-1 and COPD Foundations, was one of a kind for so many reasons, including his ability to build organizations, innovative programs, and consensus where people thought it was impossible. He was also a one of a kind boss. He believed in his team and this act of having more confidence in me than I probably deserved at such a young age, taught me I could not only find creative ways to make John’s ideas a reality, but I could seek out and form ideas on my own. His commitment to the notion that if you have a role in the problem you are trying to solve, you have a role in the solution, shaped my approach to building impactful collaborations and above all, his firm belief in the role that patients and caregivers play in ALL conversations, scientific, clinical, policy and more, will ground all future work I do.

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The article was written by Ruth Tal-Singer, PhD

The COPD Foundation is partnering with the Three Lakes Foundation on a common mission of improving the lives of individuals living with Chronic lung diseases.

Pulmonary fibrosis (PF) is a lung disease that happens when lung tissue becomes damaged and a thickened, stiff scar tissue makes it difficult for the lungs to function. PF symptoms include persistent cough, shortness of breath and fatigue. Some individuals with PF also have a diagnosis of COPD.

We are sharing with you an important message to Patients, caregivers and healthcare professionals: Pulmonary Fibrosis (PF) innovators want to hear from YOU.

To find new innovations that will make a difference for the 3-million people living with PF worldwide, Three Lakes Foundation and MATTER have partnered to launch the PF Perspectives Project. The project aims to find and amplify stories of people in the PF community and — through the learnings of those stories — identify the types of solutions needed and work with innovators to develop them.

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The article was written by Delia Prieto, BSEd, MSEd, Danielle Boyce, MPH, Bill Clark, and Ruth Tal-Singer, PhD

The COPD Foundation (COPDF) continues to monitor the impact of coronavirus disease 2019 (COVID-19) on the COPD and other chronic lung disease communities. We are using surveys to learn how the ongoing pandemic is affecting our community. The results will help us develop resources and programs that address the needs of our community of patients, families, caregivers, health care professionals and researchers. We keep the community informed through a dedicated webpage on COVID-19, and other regularly updated resources.

On March 29th, we launched the first of a series of global surveys to evaluate the experience of individuals affected by COPD and related lung diseases during the COVID-19 pandemic. As planned, we reported important results of Survey #1 in a COPD Digest post, which can be found here. Survey #2 was available online between April 26th and May 31st and was completed by 776 respondents. It included the same questions from Survey #1 as well as more detailed questions. Below are some highlights of the results from respondents who reported having COPD. It is important to note that not all respondents answered every question, so the percentages reported reflect only the respondents who answered that particular question.

Profile of Respondents with COPD

There was a total of 595 who answered the survey and reported they have COPD, chronic bronchitis or emphysema, equating to 77% of all who answered Survey #2. The majority (95.4%, n=564) of those with COPD were from the United States. Those not from the United States were from Europe (2.4%, n=14) or “Other” locations (2.2%, n=13): Canada, India, Pakistan, Australia and England.

Given the overlap between COPD and other lung conditions such as bronchiectasis, we also asked whether or not they had bronchiectasis, nontuberculous mycobacterial (NTM) lung disease, or alpha-1 antitrypsin deficiency. Those with COPD also reported having bronchiectasis (16.0%, n=92); NTM lung disease (1.9%, n=11); both, bronchiectasis and NTM (4.4%, n=25); or alpha-1 antitrypsin deficiency (3.5%, n=21).

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This post was authored by Jane Martin, BA, CRT

This is the third in a series of four blog posts on nontuberculous mycobacterial (NTM) lung disease. Thank you to NTM lung disease patient, Diane L. Gregg, for sharing the patient perspectives in this post.

Experiences with NTM lung disease vary for each patient, and the information included in this blog post is not intended as medical advice. For more information about your specific situation, please consult your health care provider.

This article was updated on August 18, 2021.

In the first two blog posts in this series, we learned about NTM lung disease, what it has in common with COPD, what causes it, and how it is diagnosed.

• NTM Lung Disease: What it is and What you Need to Know
• NTM Lung Disease: How it is Diagnosed and What you Need to Know

Now let’s look at how NTM lung disease can be managed and treated.

When a person has been diagnosed with NTM lung disease, it is helpful for that individual and their health care provider to sit down and talk about options for management, including if treatment is needed. They can discuss potential risks and benefits, always keeping in mind the importance of the patient’s quality of life.¹

Treatment

Always check with a health care provider before making any changes to an approved treatment plan.

The NTM Lung Disease Treatment Guidelines were created by leading scientific communities to provide doctors with recommendations for the treatment of NTM lung disease and are the globally recognized standard for the management of the condition. Depending on the type of infection, management typically includes a combination of various antibiotics, and the guidelines recommend a multidrug regimen of at least three antibiotics. This helps to prevent the bacteria from becoming resistant.² It’s most helpful for health care providers and patients to work together to figure out which combination of medications will be the right option for them. Any treatment decision should include a discussion with you, the patient, that includes potential side effects of therapy, the possible benefits to taking the antibiotics, and the potential for recurrence or reinfection. The guidelines also recommend that doctors evaluate if the multidrug regimen is working after 6 months of treatment, as there may be other management options for those who aren’t responding to their treatment regimen.²

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

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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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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