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Air quality is important to every individual, with or without a lung condition, but we know it can make all the difference if you are living with a breathing disorder. Read about how to maintain positive air quality within your own home:
In September of 2015, the Food and Drug Administration (FDA) convened a meeting on Nontuberculous Mycobacterial (NTM) lung disease. The meeting focus was on patients’ quality of life as it relates to the symptoms and treatment of NTM lung disease. Meeting attendees included patients, caregivers, patient advocates, healthcare professionals, patient advocacy organizations, and representatives from the pharmaceutical industry. The meeting allowed for the opportunity to hear directly from patients, caregivers, and patient advocates on their experiences with NTM and how it impacts their daily life. Although a successful meeting with various stakeholders in attendance, very little data exists in published scientific literature on the information discussed during the meeting.
August was National Immunization Awareness Month. If you have not received your pneumonia vaccine, it is not to late. Read about Pneumococcal Disease and how to prevent it by visiting: https://www.copdfoundation.org/COPD360social/Community/Blog/Article/559/Pneumococcal-Disease-What-You-Should-Know.aspx
This blog post was written by Gretchen McCreary, Research Coordinator at the COPD Foundation.
Horace Mann said that, “Every addition to true knowledge is an addition to human power.” It is only through asking questions and seeking answers that we elevate the human condition and find power against all that affects us. Research, by definition, is the systematic investigation into and study of materials and sources to establish facts and reach new conclusions. If you live with a rare disease such as Bronchiectasis or NTM, it is customary to want to pursue new avenues and much needed resolutions. This is why research is so important, as well as the power of committed individuals.
Research has contributed to the cure of diseases, improving health outcomes and enhancing the lives of future generations.
Lack of resources and committed parties can impede potential progress. Fortunately, a small group of individuals advocating and pressing for change can have exponential effects. As the old adage says, the squeaky wheel gets the grease, and issues that receive the most attention, even if only affecting a small population, are those with the most vocal advocates. Enhancements in healthcare, pharmaceuticals and prevention of diseases would not be possible without the willingness of those impacted.
I first learned of COPD360social (the online community for COPD) when it launched in late 2014. I registered immediately after learning of COPD360social and have been active since then. As an individual living with bronchiectasis, I was extremely happy for the launch of BronchandNTM360social. These platforms allow me to connect with people who know about (and live with) these diseases. I am able to share many things such as my health condition, daily activities and experiences (good and bad), and seek feedback from other people like me. I feel gratified to have the opportunity to share these things about myself and receive the much-needed support back from the community. Additionally, sharing my experiences on these online communities has helped me talk about and explain my disease to family and friends.
I’ve come to the realization that these online communities are not solely learning about health conditions and problems; they’re much more than that. They allow me to learn about other people’s lives and how they cope with similar situations. I get to discover other participants’ daily activities, exercise, hobbies, and travel experiences. Members have encouraged me to explore different ways to enjoy life, despite my disease.
It is difficult for me to put all of these emotions into words. When I am actively engaging on 360social I feel connected. I feel grateful for the support I receive through these networks, and I sincerely hope others feel the same.
The first step to solving a problem is to identify it, which has been an issue for those of us with lung and rare diseases. As a means of increasing awareness, I began entering races. I need to wear a portable oxygen concentrator because of my limited lung capacity. Last year, the magazine Runner’s World had a contest in which the winner would appear on the cover of the December issue. I recognized this as an opportunity to raise awareness of lung diseases and rare diseases to an audience of over 650,000 people.
The contest was in three stages. In the first, only the top male and the top female vote recipients move into the semifinals. The judges determine the other 98 semifinalists. Voting takes place for several months. Friends, family and even people who I’d never even met voted for me, and I made it through to the second round. I wanted people to feel that each vote for me was also a commitment to bringing attention to unneeded suffering and the need for research, treatments and cures.
Last year, Oregon Health and Sciences University (OHSU) was awarded a Patient-Centered Outcomes Research Institute (PCORI) award to evaluate and compare the clinical effectiveness and safety of long-term inhaled corticosteroids and macrolide therapies among non-cystic fibrosis (non-CF) bronchiectasis patients. The COPD Foundation is partnering with OHSU and NTM Info & Research on this study, which aims at comparing the relative safety of inhaled corticosteroids and macrolide therapy as it relates to the acquisition of NTM lung disease, and comparing the effectiveness of inhaled corticosteroids and macrolide therapy with regards to prevention of hospitalized respiratory infection.
This blog post was written by Mary Kitlowski, founder of Running On Air, who is living with Bronchiectasis.
After years of searching for answers to my health problems, my first real answer came from the diagnosis of bronchiectasis when I was 17 years old. Back in the 70’s and early 80’s the convention was to stay away from too many x-rays. My first chest x-ray revealed a piece to the puzzle that would eventually become my diagnosis of Primary Ciliary Dyskinesia (PCD).
I’ve always considered myself a PCD patient first. Bronchiectasis was just one of the symptoms of having PCD. It can be hard for me to separate out what is bronchiectasis and what is PCD. For example, I believe most bronchiectasis patients have a cough. PCD patients have a chronic cough too. Since our cilia doesn’t move properly, coughing is the only way we can clear mucous, bacterial and other irritants out of our lungs. I’ve been coughing almost from birth, most likely before bronchiectasis developed.
And again, it’s hard for me tell what is PCD related, bronchiectasis related or a combination of the two. All I can speak to is my own symptoms.
Breathing
With 41% lung capacity (FEV1), almost every breath is a reminder for me that breathing is an effort. I describe it as varying degrees of breathing through a straw. I feel like I’m always breathing through some kind of straw. Sometimes it is one of those wide straws that you can slurp a thick shake through. Other times, it is one of those small straws that a grain of salt can get stuck in.
I never know which straw it will be from day to day. Or even throughout the day. I might wake up feeling great and then by the time I head out for the gym I feel like I’m wheezing loud enough for the person on the treadmill next to me to hear.
Coughing
As I stated above, I’ve always had a cough. This, in fact, was one of the first things my allergist asked me about when I was diagnosed with bronchiectasis. He said, “I always ask you when you come in if your coughing any more than usual.” My response was, “I’m not. This how much I always cough.” To me coughing is just something I’ve always done. It has gotten worse over the years.
This blog post was written by Dr. Emily Henkle, researcher at Oregon Health & Sciences University.
In January of this year, a team led by Dr. Kevin Winthrop at Oregon Health and Science University (OHSU) began working on a Patient-Centered Outcomes Research Institute (PCORI)-funded project designed to identify priorities and create a roadmap for bronchiectasis research. The project is an important collaboration between patients, the COPD Foundation, NTM Info & Research, researchers, and healthcare providers from across the U.S. Here we describe the project and invite you to share your thoughts and experience with bronchiectasis in a brief, anonymous patient survey. The survey link is provided at the end of the post.
A research roadmap is made up of several components:
For this patient-centered roadmap development process, patient input is critical. We hope that BronchandNTM360social will provide a broad base of patients and stakeholders who will be able to review and comment on research priorities, outcomes, and treatment comparisons of interest to patients, and suggest mechanisms to fund needed research. The roadmap will provide essential direction for future non-CF bronchiectasis research and therefore the most efficient progress in caring for patients with this disease.
This blog post was written by Katie Keating, RN, MS (patient advocate).
The impact of a chronic illness affects each and every aspect of your life on a daily basis. More research is now being done on how NTM affects the quality of our lives. NYU Medical Center recently held a patient conference and I would like to summarize the key points of a patient speaker, Betsy Glaeser, Leader, NY NTM Support Group.
The two primary symptoms are fatigue and cough which can totally change your everyday ability to function.
