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.
Sponsored by Insmed Incorporated.
For a parent of a child diagnosed with a chronic illness like Crohn’s disease or ulcerative colitis, the future can be scary and overwhelming. Resources are available to help families make sense of many diseases and ailments, and some of these organizations even offer tools specifically designed to help support the care of a child patient
Understanding Pediatric Chronic Illnesses
How families can manage inflammatory bowel diseases
(Family Features) For a parent of a child diagnosed with a chronic illness, the future can be scary and overwhelming. Assembling a medical team and beginning to formulate a treatment plan, even becoming familiar with a glossary of new terminology, can be taxing.
Resources are available to help families make sense of many diseases and ailments, and some of these organizations even offer tools specifically designed to help support the care of a child patient. For example, the Crohn’s & Colitis Foundation is a leading resource for families navigating inflammatory bowel diseases like Crohn’s disease and ulcerative colitis.
What is IBD?
Crohn’s disease may occur in any part of the large intestine (also called the colon). In fact, it can happen anywhere in the entire digestive system. However, it most commonly develops right where the small and large intestine meet. In ulcerative colitis, only the colon and rectum are affected.
No one knows for sure what causes Crohn’s disease or ulcerative colitis, but experts believe several factors may lead to the development of the diseases, including genes, environmental elements like viruses and bacteria, and inappropriate immune reactions.
What are the symptoms?
“It is critical that if you suspect your child has inflammatory bowel disease, you seek care with a qualified pediatric gastroenterologist who can carefully and efficiently help determine the diagnosis and begin a treatment plan to help your child feel better, thrive, and maximize quality of life,” said Andrew Grossman, MD, pediatric gastroenterologist and chair of the pediatric affairs committee of the Crohn’s & Colitis Foundation.
How does it affect children?
They are often overwhelmed by the emotional and psychological side effects of the disease.
Learning how to manage the disease is not always easy for children. Parents play an important role in educating their children about IBD, including teaching them they need to take their health seriously and take responsibility for caring for themselves.
How can IBD be managed?
Maintaining your child’s health may also involve lifestyle accommodations, like organizing your schedule for ample bathroom breaks when away from home. You may also need to work closely with your child’s school to manage absences and academic performance along with any medical care that needs to take place during school hours.
Many families also find value in building a network of supportive friends and loved ones. One example, the Crohn’s & Colitis Foundation offers Camp Oasis – a co-ed residential camp program that allows children to meet others like them in a safe and enriching environment.
Another resource is justlikemeibd.org , a website featuring stories and videos from teens with IBD as well as information on school, dating, managing stress and diet, research updates, and resources for parents.
Is your child ready to manage his or her own care?
Photos courtesy of Getty ImagesSOURCE:
Crohn’s & Colitis Foundation
One common condition to be aware of is atrial fibrillation (AFib), which is a quivering or irregular heartbeat that can lead to blood clots, stroke, heart failure and other heart-related complications. The first step toward managing AFib and preventing serious health complications is gaining knowledge about the condition. Increase your awareness with these facts.
How to Reduce Health Risks by Understanding AFib
(Family Features) Oftentimes, seeking to improve your health starts at your core – your heart. One common condition to be aware of is atrial fibrillation (AFib), which is a quivering or irregular heartbeat that can lead to blood clots, stroke, heart failure and other heart-related complications.
Currently impacting up to 6.1 million Americans, AFib is projected to double by 2030, according to the American Heart Association. One in three individuals is at risk for developing AFib over the course of his or her lifetime, and the likelihood of developing the condition increases by almost 40 percent after the age of 55.
The average person living with AFib has a five-fold increase of experiencing a stroke than someone with a regular heartbeat. However, proper diagnosis and treatment can help reduce the chances of associated heart health complications, including stroke.
The first step toward managing AFib and preventing serious health complications is gaining knowledge about the condition. The experts at the American Heart Association are working to elevate awareness with these facts:
Symptoms and signs
“Atrial fibrillation can be challenging to diagnose,” said Dr. Georgeanne Freeman, a board-certified family medicine doctor and American Heart Association volunteer expert. “If you are feeling out of the ordinary, whether it's a racing pulse or irregular heartbeat associated with shortness of breath and fatigue, it’s time to speak with your doctor to learn your risk for AFib and lower your chance for stroke.”
Other common symptoms include dizziness, weakness, faintness or confusion; fatigue when exercising; sweating and chest pain or pressure.
People of African, Asian or Hispanic ancestry are typically less likely to suffer from AFib. However, research suggests that those with African or Hispanic ancestry living with AFib have a higher risk of death when the condition is combined with another factor such as heart failure or high blood pressure.
To learn more and to access AFib tools and resources, visit heart.org/AFib.
Photo courtesy of Getty ImagesSOURCE:
American Heart Association
When was the last time you and your doctor talked about your hearing?
(BPT) - When was the last time you and your doctor talked about your hearing?
The fact is, only about 3 in 10 adults who had a physical exam in the last year say it included a hearing screening, according to research conducted by the Better Hearing Institute (BHI). That’s a shame, because research shows that hearing health is more closely tied to whole health and quality of life than previously understood — which means that diagnosing and treating hearing loss early may be beneficial on many fronts.
To help people take charge of their hearing health, BHI has created a free digital flipbook, “How to Talk to Your Doctor About Hearing Loss,” which anyone can view and download at www.betterhearing.org/news/how-talk-your-doctor-about-hearing-loss.
The flipbook provides pertinent information to help consumers start the discussion, which is especially important because research shows that patients are more likely to initiate the conversation about hearing than their doctors are.
To go along with the free flipbook, BHI has put together this short list of reasons to speak up and start the conversation on your hearing:
1. Hearing loss has been linked to other significant health issues. In recent years, a flurry of studies has come out showing a link between hearing loss and other health issues, including depression, dementia, cardiovascular disease, diabetes, moderate chronic kidney disease, rheumatoid arthritis, sleep apnea, obesity, an increased risk of falls, hospitalization and mortality, and cognitive decline. With so much new and emerging research, it makes sense for people to talk with their doctors about their hearing as a routine part of their medical care.
2. Addressing hearing loss often has a positive impact on quality of life. Most people who currently wear hearing aids say it has helped their general ability to communicate, participate in group activities and their overall quality of life, according to BHI research. The research also shows that people with hearing loss who use hearing aids are more likely to be optimistic, feel engaged in life, get more pleasure in doing things, have a strong social network and are more likely to tackle problems actively. Many even say they feel more confident and better about themselves as a result of using hearing aids.
3. Leaving hearing loss untreated may come at a financial cost. Most hearing aid users in the workforce say it has helped their performance on the job. In fact, BHI research found that using hearing aids reduced the risk of income loss by 90 to 100 percent for those with milder hearing loss, and from 65 to 77 percent for those with severe to moderate hearing loss. People with untreated hearing loss can lose as much as $30,000 in income annually, the BHI research found. Health care spending may also be affected.
For instance, middle-aged adults (55-64) with diagnosed hearing loss had substantially higher health care costs, according to a study published in JAMA Otolaryngology–Head & Neck Surgery, indicating that hearing loss may place patients at risk for increased health care use and costs. The study authors suggested that early, successful intervention may prevent future hearing-related disabilities and decreased quality of life.
For more information on hearing loss, visit BetterHearing.org.
(BPT) - You go in for your annual visit and it goes something like this: You get weighed and measured and prodded. You see your doctor and talk about your health, maybe get a prescription refill, and most likely a referral for a screening or lab test. You walk out with the best of intentions, but you never get that test done. Sound familiar?
Many of us don't love the idea of going in for a colonoscopy or mammogram, and even the idea of a needle stick might make some of us jittery. But when it comes to cancer screenings, those tests can mean the difference between a treatable - even curable - cancer, and one that's far tougher to beat.
(For details, visit GetScreenedNow.org.)
In recent years, there's been a trend towards evidence-based medicine - looking at the evidence and deciding what works and what doesn't. The good news is that the medical evidence sometimes points to fewer tests. Here are some of the more significant changes you might notice at your next doctor visit, plus tips on how to make screenings easier on yourself.
What's new for women
If you're still getting annual mammograms, you might be able to have them less often. According to the United States Preventive Services Task Force (USPSTF), women at average risk of breast cancer need screening only every two years from ages 50 to 74. Everyone's situation is different, so talk to your doctor and together decide what's right for you.
Likewise, most women don't need once-a-year Pap tests. According to a 2012 change in guidelines, women ages 21 to 65 at average risk need this cervical cancer screening just once every three years. If you're 30 to 65, you can get a DNA test as well as a Pap, which lets you go five years between tests (if your doctor agrees). That said, you'll still want to go in for an annual wellness visit.
What's different for men
Not as much to report here, guys, but if your doctor is still ordering a prostate-specific antigen (PSA) test during your annual exam, you might want to talk about it. In 2012, the USPSTF recommended against routine PSA tests as a way to screen for prostate cancer. A high PSA level doesn't necessarily signal cancer, but could lead to unneeded treatments. While PSA test rates have been going down, a recent study found that around 40 percent of men over age 60 were still getting them.
The latest on colon screenings
If you're between 50 and 75, you probably know that you need regular colon cancer screenings. You have a growing number of options now, and they all generally involve a tradeoff between thoroughness and the length of time between screenings. In particular, more insurance companies have started to cover virtual colonoscopies (Medicare is a notable exception).
Unlike traditional colonoscopies that use a camera to look inside your colon, a virtual colonoscopy is basically a CT scan (these scans use a series of X-rays to create sharp images). Normal results on an old-style colonoscopy can often get you off the hook for 10 years; the virtual version needs to be repeated every five years.
There are also several simple lab tests that involve collecting a little stool at home and mailing it in to the lab. The newer FIT tests look at immune markers and are more sensitive than older ones. Depending on the test, these need to be done every one to three years.
How to get over your reluctance
If you're not a fan of getting tested, you're not alone. Millions of Americans aren't getting essential tests, and cancer screening rates are lowest among U.S. Latinos and Asians.
If cost is an issue, you might be happy to know that health plans under the Affordable Care Act must cover most preventive care at no cost to you (no co-pays, deductibles or coinsurance). If you have a plan that predates the 2010 law, your coverage may be different.
Here are a few simple ways you can make screenings easier for yourself
* Ahead of your annual exam, check out which exams and preventive care are recommended for you by visiting GetScreenedNow.org, a collaboration between Stand Up To Cancer and Rally Health.
* Schedule your screenings and lab tests before you leave your primary care doctor's office.
* When picking a day and time, think of how you might feel. Depending on the test, pick time of day that works best for you.
* On the day of your appointment, take someone along (for some tests you'll be sedated so you'll definitely need a driver).
* Make sure you're as comfortable as possible. If you tend to get cold, bring a wrap or take socks.
* Before you leave, ask when you can expect your results so you're not conjuring up worst-case scenarios while you wait to hear back.
* Afterward, treat yourself to your favorite little indulgence - you've earned it. Go to a movie, get a pedicure, or have a piece of pie.
(BPT) - Harley Noffsinger was a typical kid who liked to play outside and stay active. When she was 7, everything changed. She got a nose bleed, but unlike most people's experiences, her bleeding wouldn't stop. It lasted 90 minutes.
Noffsinger's parents brought her to the emergency room at the nearest hospital, where she was diagnosed with von Willebrand Disease (VWD). Like most Americans, neither Harley, nor her parents, had ever heard of VWD, and had no family history of it. Still, VWD is the most common inherited bleeding disorder, affecting about 1 percent of the U.S. population, or more than 3 million people. According to the National Hemophilia Foundation (NHF), like hemophilia, VWD can prevent the blood from clotting normally. VWD can result in extended bleeding after injury, surgery or trauma, and, in severe cases, can be fatal if not treated effectively.
"Harley was fortunate that she was diagnosed so early because, according to the Centers for Disease Control, it takes an average of 16 years from the onset of bleeding symptoms for a woman to be diagnosed with VWD," said Dr. Robert Sidonio, Jr., a pediatric hematologist-oncologist at the Aflac Cancer and Blood Disorders Center in Atlanta, Georgia. He is a consultant to NHF.
While VWD occurs equally in women and men, women are more likely to experience its symptoms because of the increased bleeding it causes during their menstrual periods, during pregnancy and after childbirth. Menstrual bleeding that lasts more than seven days is considered heavy and heavy menstrual bleeding - a period with excessively heavy flow - affects one in five American women of reproductive age, or nearly 10 million women. In fact, having a bleeding disorder can be an underlying cause of heavy menstrual bleeding. Besides VWD, women can have other bleeding disorders, such as hemophilia or rare factor deficiencies.
Over time, many women simply get used to having a heavy period. They may think it's normal because female relatives have similar experiences. However, for some women, an undiagnosed bleeding disorder may be the cause of their heavy flows and, because it's hereditary, multiple family members may also be undiagnosed.
Now age 22, Noffsinger experiences heavy periods. Before using a menstrual cup, she would have to check every 30 minutes to change her tampon or pad. "I was worried constantly that I was bleeding through," she said. "I see light pads and light tampons in stores and I get so jealous because I have to use these ginormous things."
Having heavy periods is one, but not the only symptom of a bleeding disorder, according to a new public service campaign called "Better You Know," created by NHF as part of a cooperative agreement with the Centers for Disease Control and Prevention (CDC) to raise awareness of bleeding disorders. The centerpiece of the campaign is www.BetterYouKnow.org, a website featuring a confidential, multiple-choice online questionnaire and other tools to help you determine whether you are at risk for a bleeding disorder and the next steps you can take to seek care.
According to Dr. Sidonio, you should speak to your health care provider if you've experienced one or more of the following 10 signs and symptoms of bleeding disorders:
1. Told you are "low in iron" or have been treated for anemia.
2. Experienced heavy bleeding after surgery.
3. Experienced prolonged bleeding from the gums after a dental procedure.
4. Have heavy menstrual bleeding (having to change one pad or tampon every hour).
5. Experienced heavy bleeding after childbirth or miscarriage.
6. Have frequent nosebleeds that last longer than 10 minutes.
7. Have bleeding from cuts or injuries that lasts longer than 10 minutes.
8. Bruise easily, with bruises that are raised and larger than a quarter.
9. Have blood in your stools from bleeding in your intestines or stomach, or blood in your urine from bleeding in your kidneys or bladder.
10. Have someone in your family who has one or more of these symptoms, or a family member who has been diagnosed with a bleeding disorder such as VWD or hemophilia.
If you receive a bleeding disorder diagnosis, remember it can be managed. For Noffsinger, whose story is featured on www.BetterYouKnow.org, having VWD has not prevented her from living life fully. Her future plans include having children, travel and more. Knowing her body and what to expect with bleeding has helped Noffsinger gain confidence to live fully.
"If you don't know what's going on and you have a period that lasts for three weeks and you're freaking out and think you're dying, you're going to go to the hospital," said Noffsinger. "But if you know you're going to bleed for three weeks and it's going to go away, you can relax and have a calm state of mind about it. That's why I'm doing all I can to spread the word about BetterYouKnow.org. I want everyone to know that, if you have a bleeding disorder, your life can be better if you know about it, and seek care and treatment."
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