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.”

Staying Informed

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.

How the Internet Can Help Prevent Alzheimer’s Disease

(Family Features) Over the past 10 years, researchers have learned Alzheimer’s disease starts much earlier than the onset of symptoms – 10-20 years before an individual, family member or friend might notice the signs of the debilitating disease.

According to the Alzheimer’s Association, 5.5 million Americans, of all races and ethnicities, age 65 and older currently live with Alzheimer’s disease, which is expected to grow to more than 7 million people by 2025.

The first-of-its-kind Alzheimer Prevention Trials Webstudy (APT Webstudy), funded by the National Institutes of Health, aims to increase the pace of research by enlisting thousands of healthy volunteers who can quickly be enrolled in clinical trials focused on preventing Alzheimer’s disease. Enrollees in the APT Webstudy can use the internet to help stop the disease while being alerted to changes in their own memory function.

“In order to change the lives of the numerous people and their loved ones who will be affected by Alzheimer’s, we need everyone to get involved with prevention efforts,” said Paul Aisen, MD, co-principal investigator of the APT Webstudy. “The bigger the army of volunteers, the faster we can work to prevent this terrible disease.”

Volunteers can access the Webstudy when and where it is convenient for them, such as on their computer or tablet, or even a public library; anywhere they can access the internet. Volunteers participate in regular online memory testing. If there is a change in memory function, eligible volunteers are alerted and may be invited to a no-cost, in-person evaluation at one of the research sites across the country.

“This is an opportunity for everyone to help future generations avoid the suffering caused by Alzheimer’s,” Aisen said. “With enough volunteers, we will be one step closer to seeing the first Alzheimer’s survivor.”

Researchers are looking for a diverse group of people ages 50 or older who have normal thinking and memory function. Volunteers must be willing to answer a few questions about their family and medical history and provide information about their lifestyles. Volunteers will take online memory tests every three months, each one about 20 minutes long.

If you are interested in participating, visit aptwebstudy.org to learn more.

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Don't Let Stroke Strike Twice

(Family Features) Not all strokes can be prevented, but making healthy lifestyle choices, like exercising, eating right, maintaining a healthy weight and treating conditions such as high blood sugar, cholesterol and blood pressure can help reduce your risk of another one.

While there are about 7.2 million stroke survivors in the United States, people who have had a stroke are at high risk of having another one. In fact, about one in every four stroke survivors will have a second one.

Efforts like Together to End Stroke, an American Stroke Association initiative, nationally sponsored by Bayer Aspirin, work to educate stroke survivors and caregivers about how they can avoid a second occurrence.

Because the consequences of a second stroke can be more detrimental than the first, it’s important to recognize the signs, which come on suddenly, and act quickly. An easy way to remember the most common warning signs is the acronym F.A.S.T., (F – face drooping, A – arm weakness, S – speech difficulty, T – time to call 911).

Talk to your doctor about medications that may help you with your stroke prevention efforts. For example, taking aspirin regularly or other blood clot prevention medications can help reduce the risk of another ischemic stroke.

Consider following the American Heart Association and American Stroke Association’s “Life's Simple 7” to achieve ideal health:

Don't smoke. Smoking puts you at higher risk for heart disease and stroke. Quitting is one of the best things you can do to improve your health and add years to your life. You’re more likely to quit for good if you prepare for your last cigarette and the cravings, urges and feelings that come with quitting.

Be physically active. A good starting goal is at least 150 minutes of physical activity a week, but if you don’t want to sweat the numbers, just move more. Find forms of physical activity you like and will stick with and build more opportunities to be active into your routine.

Eat a healthy diet. Healthy eating starts with simple, healthy food choices. You don’t need to stop eating your favorite meals, just use substitutions to make them healthier. Learn what to look for at the grocery store, restaurants, your workplace and other eating occasions so you can confidently make healthy, delicious choices whenever and wherever you eat.

Maintain a healthy weight. The benefits of maintaining a healthy weight go beyond improved energy and smaller clothing sizes. By losing weight or maintaining a healthy weight, you can also reduce your risk of heart disease and stroke. There’s no trick to losing weight and keeping it off, but the majority of successful people modify their eating habits and increase physical activity.

Control cholesterol. Having large amounts of low-density lipoprotein cholesterol, the bad cholesterol, in the blood can cause build up and blood clots, which can lead to heart attack or stroke. Reducing your fat intake, especially trans fats, often found in fried foods and baked goods, can help reduce your cholesterol. Adding more foods with omega-3 fatty acids like fish and nuts, as well as soluble fiber and whey protein, helps in managing cholesterol.

Manage blood pressure. Nothing causes more strokes than uncontrolled high blood pressure. Of the 116.4 million people in the United States who have high blood pressure, fewer than half have it under control, putting them at increased risk of stroke. Lowering your blood pressure by 20 points could cut your risk of dying from stroke by half.

Control blood sugar. By managing your diabetes and working with your health care team, you may reduce your risk of stroke. Every two minutes, an adult with diabetes in the United States is hospitalized for stroke. At age 60, someone with type 2 diabetes and a history of stroke may have a life expectancy that is 12 years shorter than someone without both conditions.

For more information on how to prevent stroke, and a complete list of warning signs, visit strokeassociation.org/americanstrokemonth.

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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 and ulcerative colitis are the two most common types of inflammatory bowel diseases (IBD). These chronic conditions produce similar symptoms, use similar therapies, and are both treatable. However, they are not the same.

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?
Despite the differences between Crohn’s disease and ulcerative colitis, both can produce similar symptoms when active, all brought on by chronic inflammation. Symptoms may include diarrhea, rectal bleeding, urgent need to move bowels, abdominal cramps and pain, sensation of incomplete evacuation, and constipation.

“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?
When IBD is diagnosed in childhood, it may be more extensive and follow a more severe course than when it is diagnosed in adulthood. While symptoms are similar in adults and children, some children with IBD experience delayed puberty and some fail to grow at a normal rate. Dealing with disease relapses, frequent doctor visits, hospitalizations, treatments, and even surgery, many children with IBD miss significant school time and social activities.

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?
It is possible to live a full, rewarding, happy, and productive life with IBD. Treatment begins with finding a pediatric gastroenterologist you trust. Your child’s IBD treatment may ultimately involve a wide range of therapies including medication, nutritional adjustments, and surgery.

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?
For young adults, managing IBD may be particularly challenging, and this stage may be further complicated by the transfer of care from a pediatric health care team to an adult health care team. If you have a child taking the next steps into adult care, consider sharing these tips from the Crohn’s & Colitis Foundation and visit crohnscolitisfoundation.org/campus-connection to help your young adult become independent in his or her IBD management:

• Understand your disease and how it affects you personally, including your typical symptoms and signs of a flare. Also, be sure you understand when and how to contact your health care team.

• Know your medications and how much you take. This is especially important when you see other doctors so they can help you avoid medicines that don’t work well with your IBD medications.

• While a parent is still involved, practice becoming your own advocate with your doctor and others, such as school administrators. Ask questions and take an active role in your treatment.

• When your doctor orders tests or procedures, be sure you understand any preparations that are required, and be sure to follow up so you understand the results and any changes necessary to your treatment.

• If you move, enroll in a new insurance plan, or travel, know what medical services will be accessible and covered so you can make the best decisions about your health.

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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:

Causes
While in some cases the cause is unknown, AFib can be the result of damage to the heart's electrical system from other conditions such as longstanding, uncontrolled high blood pressure, obesity, smoking and heart disease. For example, smokers are 20 percent more likely to develop AFib than nonsmokers.

Symptoms and signs
A person living with AFib may have symptoms like a fluttering heartbeat, but he or she may not have symptoms at all. Nearly 80 percent of people who report having AFib note they did not experience symptoms, which can lead to the condition being overlooked or confused with other conditions, such as anxiety.

“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.

At-risk populations
Anyone, at any age, can develop AFib. People over age 50, those with high blood pressure or other forms of heart disease and those with a family history of the condition are at highest risk and should discuss their medical history with their doctors.

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.

Risk factors
While some people living with AFib are unaware of the condition due to not experiencing symptoms, it causes the heart to beat erratically, stops blood from moving through the heart efficiently and may result in pooling or clotting. The clot may block blood flow to the brain, causing a stroke. Risk factors such as age, high blood pressure, heart failure, diabetes or medical history contribute to individuals’ five-fold risk of stroke.

Treatment options
Although most primary care providers claim to have general knowledge of AFib, there are still challenges in their abilities to diagnose it. The treatment goals start with a proper diagnosis through an in-depth examination performed by a medical professional, health care provider or cardiologist. The exam usually includes questions about the individual’s medical history and often a test such as an EKG or ECG to determine heart rate, rhythm and other information. If you have AFib, understand your options for medications and discuss with your doctor. Anyone on anticoagulants should carry information and be able to alert medical professionals in an emergency that he or she is on blood thinners.

To learn more and to access AFib tools and resources, visit heart.org/AFib.

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