NTM (nontuberculous mycobacterial lung disease) is still considered rare, but cases are growing 8 percent each year. In 2018, it is estimated that 75,000–105,000 patients were diagnosed with NTM lung disease in the U.S. Since awareness of NTM lung disease is limited and the symptoms of NTM lung disease, like chronic coughing, feeling tired often and shortness of breath, are similar to other lung conditions, many people who have it may not even know it for months or sometimes years.
(BPT) - Having a friend or loved one with a chronic and progressive condition teaches you many things: patience, understanding and adapting to lifestyle changes after diagnosis. But for Mary, supporting her friend, Barbara, living with a serious lung condition called nontuberculous mycobacterial (NTM) lung disease taught her the importance of listening.
While taking weekly walks together, Mary first noticed Barbara was experiencing respiratory symptoms, such as coughing fits and getting tired very easily. Barbara’s symptoms continued for two years, and Mary later found out that Barbara was living with NTM lung disease — a serious and progressive condition caused by bacteria that can lead to lung damage and respiratory symptoms.
From speaking with Barbara, she realized that while Barbara was relieved to have an explanation for her symptoms, she also felt overwhelmed and scared by her new diagnosis.
Mary recalls, “As her friend, I was upset that she had to face this health issue and wanted to know how I could help. I realized the best way I could show Barbara my support was to ‘walk with her’ and let her know she wasn’t alone.”
About NTM Lung Disease
NTM bacteria are common in the environment and can be found in tap water, showerheads, steam from hot tubs, and soil from parks and gardens. While everyone comes into contact with NTM bacteria during their daily lives, most people do not develop NTM lung disease because their lungs are healthy enough to clear the bacteria. However, people with a history of lung conditions, like bronchiectasis, chronic obstructive pulmonary disease (COPD) or asthma, are more likely to develop NTM lung disease because the damage from these conditions can make it easier for NTM to infect their lungs.
NTM lung disease is considered rare, but cases are growing 8 percent each year. In 2018, it is estimated that 75,000–105,000 patients were diagnosed with NTM lung disease in the U.S. Since awareness of NTM lung disease is limited and the symptoms of NTM lung disease, like chronic coughing, feeling tired often and shortness of breath, are similar to other lung conditions, many people who have it may not even know it for months or sometimes years.
Providing Encouragement and Understanding
Following an NTM lung disease diagnosis, patients may have a hard time coping with the impact the disease can have on their lifestyle. Emotional support from family and friends is crucial to help patients navigate these new challenges.
After learning about Barbara’s diagnosis, Mary encouraged her to speak about the tests she was undergoing and treatment she was taking as well as how she was feeling. Mary was also there to support Barbara through some of the lifestyle changes that she was making to help manage her condition — whether it was hearing about the adjustments she made when traveling or ways to help limit her exposure to NTM bacteria at home.
Mary also understood that keeping up weekly walks helped Barbara physically and emotionally. She made sure that they stuck to their routine and made adjustments whenever necessary, such as walking for shorter distances or slowing down their pace based on how Barbara was feeling.
“Barbara’s diagnosis made our friendship stronger because she knew she could confide in me and receive the support and reassurance she needed — even if that just meant listening,” Mary shares. “While everyone’s experience with NTM lung disease is different, sometimes knowing there is someone willing to listen to what you’re going through can make a world of difference.”
Like many other loved ones of NTM lung disease patients, Mary had never heard about the condition before Barbara’s diagnosis. She let Barbara be her teacher and learned a lot about the condition through her experience. Today, she’s more informed about NTM lung disease and can be a better source of guidance and support for Barbara.
There are also several online patient resources available to learn more about NTM lung disease, such as the Voices of NTM Lung Disease eMagazine on AboutNTM.com, which provides information on living with and managing NTM lung disease through first-person stories from different members of the community, like Barbara and Mary. On AboutNTM.com, you can also access more information on how to join support groups to connect with others who have NTM lung disease, and how to sign up to receive helpful resources.
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Nearly 16 million people in the United States are currently living with a COPD diagnosis, and millions more don’t know they have it. In people with COPD, the airways that carry air in and out of the lungs become partially blocked, which makes it increasingly difficult to breathe. If left undetected, the disease can greatly affect your quality of life and your ability to complete even ordinary daily activities.
Are Your Lungs Trying to Tell You Something?
(Family Features) Do you get short of breath doing daily activities? Feel like you’re unable to take deep breaths? Are you constantly coughing or wheezing? If you said yes to any of these questions, you may be experiencing symptoms of chronic obstructive pulmonary disease (COPD), a serious, potentially devastating lung disease also known as chronic bronchitis or emphysema. Though it’s easy to think of these symptoms as just part of “getting older’’ or as problems that come with allergies, often they are not.
Nearly 16 million people in the United States are currently living with a COPD diagnosis, and millions more don’t know they have it. COPD is the fourth leading cause of death in the United States and a leading cause of disability.
In people with COPD, the airways that carry air in and out of the lungs become partially blocked, which makes it increasingly difficult to breathe. If left undetected, the disease can greatly affect your quality of life and your ability to complete even ordinary daily activities.
COPD often occurs in people who have a history of smoking or long-term exposure to secondhand smoke and other lung irritants, such as air pollution, chemical fumes, and dusts from the environment or workplace. The chances of getting COPD also increases significantly in people who have alpha-1 antitrypsin deficiency, a rare genetic condition.
While COPD develops slowly and worsens over time, its symptoms can be treated and its progression can be slowed, which is why early detection and treatment are so important. If you are noticing any issues with your breathing, talk to your health care provider about getting tested for COPD. The sooner you get a diagnosis, the sooner treatment can begin. Your provider will design a treatment plan to help address your symptoms and improve your lung function and quality of life.
The key to keeping COPD at bay – or preventing it from getting worse – is to understand and recognize the signs and symptoms early and discuss them with your health care provider. The sooner this happens, the sooner you can get back to doing the things you love.
Through educational efforts like the Learn More Breathe Better program (https://www.nhlbi.nih.gov/breathebetter ), the National Heart, Lung, and Blood Institute shares valuable information about the symptoms of COPD, as well as how to diagnose and treat it. With these tools, those living with COPD can effectively manage the disease, and those who have symptoms can find the support and assistance they need.
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National Heart, Lung, and Blood Institute
(BPT) - Persistent dry cough. Fatigue. Shortness of breath. These symptoms are sometimes associated with a passing virus, especially during the peak of cold and flu season. Coughs can last an average of 18 days; however, if your dry cough is still lingering after two months, another condition, such as pulmonary fibrosis, might be the cause.
“There are more than 50,000 new cases of pulmonary fibrosis diagnosed every year, yet many patients have never heard of it prior to their diagnosis,” said William T. Schmidt, president and CEO of the Pulmonary Fibrosis Foundation (PFF). “Some individuals with the disease may be first misdiagnosed with pneumonia, bronchitis or asthma, which is why it is imperative we continue to raise awareness about the disease, common symptoms and risk factors.”
What is pulmonary fibrosis?
While the condition is largely unknown, more than 200,000 Americans are living with pulmonary fibrosis, a progressive, debilitating lung disease. In simple terms, pulmonary fibrosis is scarring in the lungs that, over time, can destroy the normal lung and make it hard for oxygen to get into the blood.
Currently, there is no cure once scarring has begun, but the PFF is mobilizing people and resources to provide access to high-quality care, as well as leading research for a cure so individuals with pulmonary fibrosis will live longer, healthier lives.
What are the symptoms of pulmonary fibrosis?
There are three main symptoms of pulmonary fibrosis — shortness of breath, a dry, hacking cough and fatigue. If you have two or more of these lingering symptoms, they should be taken seriously and you should speak with your physician.
“I started off with a slight, dry cough. I didn’t know what it was,” said Dot Delarosa, a pulmonary fibrosis patient who received a life-saving lung transplant in 2010. “I would talk and I would cough, talk and cough. To me, this was my normal.”
While anyone can develop pulmonary fibrosis, it is more likely to occur in those 60 years and older with a history of smoking, putting hundreds of thousands of Americans at risk for the disease. Other risk factors include: a family history of pulmonary fibrosis; prior or current use of certain medications such as chemotherapy and amiodarone; a history of radiation treatment to the chest; environmental and occupational exposures including indoor mold, birds or asbestos; and a previous diagnosis of rheumatoid arthritis or another autoimmune disease.
How do I find out if I have pulmonary fibrosis?
Although many of these symptoms are seen with more common diseases such as COPD, asthma and heart disease, it is important to consider pulmonary fibrosis. If you have symptoms or risk factors, the first step is to speak with your healthcare provider. Early diagnosis is key to maximizing treatment options. With a lesser known disease like pulmonary fibrosis, advocating for your health is crucial. To help you start that conversation with your doctor, a downloadable Pulmonary Fibrosis Risk List is available at AboutPF.org.
To be diagnosed, you may need further testing after a thorough physical exam with your physician. Testing to help facilitate a clear diagnosis may include pulmonary function testing and/or high-resolution computed tomography.
If further action needs to be taken, you can find a local pulmonologist through the PFF Care Center Network, which includes centers with experience in the diagnosis and treatment of pulmonary fibrosis.
For more information or to find a pulmonologist near you, visit AboutPF.org.
(BPT) - When Fern started coughing over and over again, she was repeatedly diagnosed with bronchitis and recurring pneumonia. However, both Fern and her husband Philip knew that something wasn’t quite right. Fern and Philip’s persistence led to Fern’s diagnosis of nontuberculous mycobacterial (NTM) lung disease, a progressive and chronic condition caused by bacteria that are common in the environment.
“It took over six years for Fern to be accurately diagnosed with NTM lung disease and every day leading up to the diagnosis was a challenge — from doctors telling us no treatment was needed to the day-to-day reality of respiratory therapies,” said Fern’s husband, Philip. “But the biggest challenge by far was not being able to definitively state what she had and not knowing what plan of action to pursue.”
About NTM Lung Disease
Nontuberculous mycobacterial lung disease is an infection caused by bacteria that are aerosolized, which means they exist in water particles that float in the air and are breathed in. NTM bacteria is common in the environment and can be found places such as tap water, showerheads, steam from hot tubs, mist and soil from parks and gardens. In fact, one study across 25 states showed that
NTM bacteria was found in nearly eight out of ten water samples.
Everyone comes into contact with NTM bacteria during their daily lives. However, not everyone is at risk of getting NTM lung disease. Most people do not become infected because their lungs are healthy enough to clear the bacteria. But people who have conditions such as bronchiectasis, chronic obstructive pulmonary disease (COPD) and asthma are more likely to develop NTM lung disease, because conditions that cause damage to the lungs make it difficult to clear NTM bacteria.
Since the symptoms of NTM lung disease, such as cough, fatigue and shortness of breath, are similar to those of other lung conditions, many people who have it may not even know it for months or sometimes years. NTM lung disease is sometimes misdiagnosed or not diagnosed at all because many people with symptoms think it’s due to a lung condition they already have.
Talk to a Doctor about NTM Lung Disease
Over time, NTM lung disease symptoms can get worse, and in some cases, the disease can cause severe, even permanent damage to the lungs, so early detection and management is crucial. If you think you or a loved one may have NTM lung disease, talk to your doctor about getting tested and visit AboutNTM.com for additional information.
Resources for NTM Patients and Caregivers
Throughout the diagnosis and treatment journey, Fern and Philip met patients from across the country who had similar experiences. Together, Philip and Fern started a non-profit organization, NTM Information & Research (NTMir), to save and improve lives through research, education, early detection and improved treatments for people with NTM lung disease. Over the past ten years the organization has grown to be a significant resource for patients with NTM lung disease and their caregivers as well as clinicians who treat the condition.
“When Fern was first diagnosed, information about NTM lung disease was scarce and we knew the best way to arm ourselves was to find out as much about NTM as possible,” Philip said. “Learning more about the disease, starting conversations with doctors, getting support from those around you and others with the same condition — those are all imperative to patients and caregivers alike.”
NTMinfo.org provides a library of tools and information, as well as an online community, for additional support. Resources can also be found at AboutNTM.com, such as a discussion guide to help prepare for the next doctor appointment, real patient stories and information about NTM lung disease.
(BPT) - For people living with asthma, managing the condition becomes part of their daily life. But some may not know that, in spite of their best efforts, their asthma may still be uncontrolled.
Benjamin Buckley was one of those people. Ben, as he was known, was just 7 years old when he died from asthma-related complications in 2014. Now, Ben’s mother, Cristin Buckley, is sharing his story in an effort to help raise awareness of just how serious asthma can be.
According to Cristin, it was a normal Saturday morning in the Buckley household. Ben went to his sister’s basketball game with the rest of the family, but when the game ended, Ben asked if he could go home and use his nebulizer, as he was experiencing an asthma attack.
Later that day, Cristin received a frantic call from her husband and daughter and came home to find Ben had collapsed in the driveway. Police and paramedics were already on the scene performing CPR. They were able to start Ben’s heart, but he was unconscious and not able to breathe on his own. He remained in a coma for five days until he passed away.
“What we didn’t realize was that Ben was using his rescue inhaler way more than he should have been. We were refilling it once a month,” said Cristin. “The pharmacy just kept refilling the prescription, so we didn’t think it was an issue. Looking back now, we know his asthma was uncontrolled.”
And it appears the Buckley family is not alone, as studies indicate that asthma is responsible for deaths every day in the United States, most of which are believed to occur in patients with uncontrolled asthma.
“Uncontrolled asthma can have a huge impact on a patient’s health,” said Dr. Purvi Parikh, a New York City-based allergist and immunologist and national spokesperson for the Allergy and Asthma Network. “Patients may not know the signs — but if someone is using their rescue inhaler more than twice a week, and their asthma is interrupting daily activities and sleep, they should really talk to their doctor immediately to assess if it is uncontrolled.”
Cristin’s number one priority today is that Ben’s asthmatic twin brother Adam, now 11 years old, is equipped to handle an attack on his own. To ensure he is prepared, Cristin takes Adam for his annual check-up with his allergist before the school year starts.
“Make sure their doctor takes the time to sit down and teach them how to properly use their inhaler,” Cristin said. “People think they can just put it in their mouth and take a few puffs and it works just fine, but so much medicine is wasted or doesn’t get into the lungs because they’re not taking a deep enough breath.”
Another one of her main priorities, particularly before school starts, is to make sure all of Adam’s inhalers have enough medicine in them. As such, Cristin relies on inhalers fitted with dose counters to help both her and Adam better manage his asthma. A dose counter works by showing the user exactly how many doses are left in the inhaler — similar to looking at a bottle of pills to see how much medicine is left.
“I think dose counters are one of the best things ever invented,” Cristin said. “Before they were integrated into inhalers, you were blindly leading your child. You had no idea how much medicine was left.”
Dr. Parikh also noted that the addition of a dose counter to asthma management can create a helpful dialogue between patients and their doctors. She explained how the dose counter allows the doctor to see how much medicine has been used since the previous visit and determine if a patient is using their rescue inhaler too frequently.
“When using an inhaler that does not include a dose counter, you really are taking a gamble on your life,” said Cristin.
For additional information on the importance of dose counters, visit KnowYourCount.com, and for more on Ben and Cristin’s story, visit www.BenWasHere.org.
Mrs. Buckley has been compensated for her time in contributing this program.
(BPT) - Breathe in. Breathe out. Just take a moment to inhale and exhale. We too often take breathing for granted, but what if taking a breath was a challenge?
If you’re someone living with Chronic Obstructive Pulmonary Disease (COPD), the third leading cause of death in the United States (US), or know someone living with this chronic respiratory disease, breathing challenges may impact how you live your life. As of 2010, there were more than 14 million people identified as having COPD in the US, and another estimated 12 million people who remain undiagnosed.
In an effort to celebrate life and the important role that breathing plays within it, AstraZeneca has partnered with New York City-based filmmaker Erlendur Sveinsson to produce Ode to Breathing. Ode to Breathing is a documentary-style short film that strings together brief vignettes, providing a moving look at people doing an ordinary yet profound thing: breathing. It can be found online at www.odetobreathing.com.
People living with COPD or their caregivers can consider the following tips when thinking about respiratory health.
1. Keep an eye on symptom changes. Early COPD detection can impact disease management, which makes it important to monitor for changes in your breathing and recognize symptoms such as shortness of breath while performing daily activities, chronic cough, fatigue and wheezing.
2. Remember, COPD in many cases is preventable. Risk factors to be aware of may include smoking tobacco (including second-hand or passive exposure); indoor air pollution (such as solid fuel used for cooking and heating); outdoor air pollution; occupational dusts and chemicals (vapors, irritants and fumes); and frequent lower respiratory infections during childhood.
3. Stay inspired and educated. Visit Ode to Breathing at www.odetobreathing.com and watch the inspirational video and access available helpful resources for COPD patients. One such resource is a free e-book that may help people with respiratory illnesses breathe easier with breathing exercises, tips for making day-to-day activities like chores easier, and ways to manage breathing challenges while at work or traveling.
4. Don’t be afraid to speak with your doctor. If you think you or a loved one may be experiencing COPD symptoms, speak to a healthcare provider to determine what options are available to help you breathe easier to help you enjoy life’s simple moments.
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