NIH MedlinePlus Magazine FALL 2017
Trusted Health Information from the National Institutes of Health
IN THIS ISSUE Celiac Disease: Going Gluten-Free Updates on Hearing Loss Step Inside The Latest on NIH’s Clinical Managing COPD Center with ‘First in Human’ Predicting Autism in Documentary High-Risk Infants
COVER STORY ‘Dancing with the Stars’ Champion and NFL Player Rashad Jennings Tackles ASTHMA FRIENDS OF THE NATIONAL LIBRARY OF MEDICINE
National Library of Medicine at the National Institutes Of Health 8600 Rockville Pike, Bethesda, MD 20894 www.nlm.nih.gov www.medlineplus.gov
DIRECTOR, NLM Patricia Flatley Brennan, RN, PhD DIRECTOR, OFFICE OF COMMUNICATIONS AND PUBLIC LIAISON (OCPL), NLM Kathleen Cravedi MEDLINEPLUS AND MEDLINEPLUS EN ESPAÑOL TEAMS, NLM Fedora Braverman WRITER-EDITOR, NLM Kathryn McKay OUTREACH CONSULTANT, NLM Elliot Siegel, PhD MEDICAL ILLUSTRATOR, NLM, AND INFORMATICS FELLOW Jeff Day, MD
Friends of the NLM Officers CHAIRMAN Glen P. Campbell PRESIDENT Barbara Redman, PhD, RN EXECUTIVE COMMITTEE CHAIRMAN H. Kenneth Walker, MD SECRETARY Naomi C. Broering, MLS, MA TREASURER NIH MedlinePlus Magazine Cover Star Dennis Cryer, MD
Nick Jonas Recognized for Diabetes Advocacy NIH MedlinePlus magazine is published by Friends of the NLM in conjunction with erformer Nick Jonas received the “2017 Hero Award” at this year’s Radio Disney Music Awards show for his work STstrategicRAT communicationsCOMM fighting for type 1 diabetes research advances and patient 24 Superior Drive, Suite 103 care. Jonas was featured on the cover of this spring’s Natick, MA 01760 | (508) 907-7000 PRESIDENT AND CEO PNIH MedlinePlus magazine, in which he discussed his experiences Robert George with the disease. DIRECTOR OF OPERATIONS Jonas was diagnosed at age 13 and has translated his battle fighting Carolyn Medeiros type 1 diabetes into advocacy. He has spoken out in favor of NIH research DIRECTOR, BUSINESS DEVELOPMENT Michele Tezduyar as an advocate for the Juvenile Diabetes Research Foundation (JDRF) MANAGING EDITOR and in 2015 founded Beyond Type 1, an organization focused on raising Emily Poe awareness and support for diabetes. SENIOR EDITOR During his acceptance speech, the Selby Bateman entertainer asked children with type STRATEGIC ADVISOR Peter Reinecke 1 diabetes to come onto the stage to DESIGN & TECH LEAD help him receive the award. Jonas told Mary Ellen Slater the audience, “Every day can be an PROJECT MANAGER opportunity to be a hero if you’re kind Alison Lutes to someone who needs it or you find a STRATEGIC PLANNING AND LOGISTICS Dave Sears cause you’re passionate about.”
Articles in this publication are written by professional Glen P. Campbell, Chairman journalists. All scientific and medical information is reviewed for accuracy by representatives of the National Friends of the National Library of Institutes of Health. However, personal decisions regard- Medicine ing health, finance, exercise, and other matters should be made only after consultation with the reader’s physician www.fnlm.org or professional advisor. Opinions expressed herein are not necessarily those of the National Library of Medicine. FALL 2017 Volume 12 inside Number 3
GET INVOLVED NIH MedlinePlus magazine is published quarterly, in print and online. For a free subscription, visit medlineplus.gov/ magazine/subscribe.html
GET INVOLVED Donations and Sponsorships If you are interested in 22 providing a sponsorship or other charitable donation to support and extend the reach of this publication, please FEATURES DEPARTMENTS contact: Friends of the NLM 08 Going Gluten-Free 04 To Your Health (202) 679-9930 4720 Montgomery Lane Life with celiac disease News, notes, & tips Suite 500 from NIH Bethesda, MD 20814 13 Hearing Loss New studies work to 28 From the Lab improve hearing care Latest research CONNECT WITH US updates from NIH Follow us on Facebook 18 Breathtaking: www.facebook.com/mplus.gov On the Web www.facebook.com/ Managing a COPD 30 medlineplusenespanol Diagnosis Find it all in one place! Follow us on Twitter @medlineplus NIH national action plan works to combat lung 31 Contact Us Follow us on Google Plus MedlineplusGovNLM disease NIH Is here to help Outrunning Asthma 22 NIH’s “First Rashad Jennings talks in Human” health, determination, and documentary the importance of research 6 IMAGE: ABC, DISCOVERY DISCOVERY ABC, IMAGE: to your NEWS, NOTES, & TIPS health FROM NIH The ABCs of GERD HEALTH TIPS Gastroesophageal reflux (GER) causes LOWER ESOPHAGEAL SPHINCTER your stomach contents to come back up into OPEN ALLOWING ACID REFLUX your esophagus, causing heartburn or acid reflux. Gastroesophageal reflux disease (GERD) is a long-lasting and more serious form of GER. GERD Awareness Week 2017 takes place from Nov. 19 through 25. This fall, as you sit down to eat turkey or open your Halloween candy, watch out for potential GERD symptoms and contact a provider if you are concerned. For more information, visit the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) website and read the overview below.
Symptoms ɠ Smoking, or inhaling secondhand smoke The most common symptom of GERD is regular heartburn, ɠ Certain medicines: a painful, burning feeling in the middle of your chest, ɠ Those that doctors use to treat asthma specifically behind your breastbone and in the middle of ɠ your abdomen. Not all adults with GERD have heartburn. Medicines that treat high blood pressure Other common GERD symptoms include: ɠ Antihistamines: medicines that treat allergy symptoms ɠ Bad breath ɠ Painkillers ɠ Nausea ɠ Sedatives: medicines that help put you to sleep ɠ Pain in your chest or the upper part of your abdomen ɠ Antidepressants: medicines that treat depression ɠ Problems swallowing or painful swallowing Treatment ɠ Respiratory problems Anyone, including infants and children, can have GERD. If not ɠ Vomiting treated, it can lead to more serious health problems. In some ɠ The wearing away of your teeth cases, you might need medicine or surgery. However, many people can improve their symptoms by: Causes ɠ Avoiding alcohol and spicy, fatty, or acidic foods that GERD happens when your lower esophageal sphincter trigger heartburn becomes weak or relaxes when it shouldn’t. This in turn ɠ Eating smaller meals causes stomach contents to rise up into the esophagus. The ɠ lower esophageal sphincter can become weak or relax from Not eating close to bedtime things such as: ɠ Losing weight if needed ɠ Increased pressure on your abdomen from being ɠ Wearing loose-fitting clothes overweight, obese, or pregnant ɠ Quitting smoking IMAGES: ADOBE STOCK IMAGES:
4 Fall 2017 NIH MedlinePlus The Opioid Crisis BY THE NUMBERS Opioid misuse and addiction is a major public health crisis. Opioids, sometimes called narcotics, are a type of drug. They include strong prescription pain relievers and the illegal drug heroin. Millions of Americans suffer from opioid use disorder. Millions more suffer from chronic pain. Earlier this year, NIH Director Francis S. Collins, M.D., Ph.D., met with research and development leaders from the world’s leading biopharmaceutical companies to discuss the opioid crisis. The meeting highlighted new ways for government and private industry to work together to address the opioid crisis and find better ways to manage pain. Stay tuned for updates on this important initiative from NIH. When to see a provider See a provider if your gastroesophageal An estimated 2.1 reflux symptoms do not get better with million Americans over-the-counter medicines or changing used prescription drugs your diet. nonmedically for the first If your symptoms don’t improve with time within the past year. lifestyle changes and medicine, you may need testing and may be referred to a specialist. Among those who reported past-year nonmedical use Tests to diagnose GERD of a prescription drug, ɠ Upper gastrointestinal (GI) nearly 12% met criteria endoscopy and biopsy: A provider uses for prescription drug use an endoscope to see inside your upper disorder. GI tract. This procedure takes place at a hospital or an outpatient center. More than 1.2 million ɠ Upper GI series: An upper GI series looks at the shape of your upper GI tract emergency department using x-rays. visits in 2011 were the ɠ result of nonmedical use of Esophageal pH impedance prescription drugs. monitoring: Measures the amount of acid in your esophagus while you do normal things, such as eating and sleeping. There was a 72% increase ɠ Esophageal manometry: Measures in hospitalizations related muscle contractions in your esophagus. +72% to opioid use from 2002 A gastroenterologist may order this 2002 2012 to 2012. procedure if you’re thinking about anti- reflux surgery. T
SOURCE: National Institute of Diabetes and SOURCE: National Institute on Drug Abuse Digestive and Kidney Diseases (NIDDK) www.niddk.nih.gov IMAGES: ISTOCK IMAGES:
Fall 2017 medlineplus.gov/magazine 5 What Happens at the ‘House of Hope’?
“FIRST IN HUMAN,” a new documentary series from the Americans to take part in clinical trials,” said NIH Director Discovery Channel, follows four patients at NIH’s Clinical Francis Collins. Center, also known as the “House of Hope.” Two of the “Not only do clinical trials offer sick people who have no patients have cancer and two have rare, inherited diseases. other options a chance to receive experimental treatments The three-part documentary is named for the “first in that may extend or save their lives, such work is essential human” trials, or trials in which new, innovative medical for advancing scientific knowledge in ways that will benefit therapies are tested on patients for the first time. Viewers the health of future generations,” he added. can step behind hospital doors and learn about these FOR MORE INFORMATION ABOUT CLINICAL TRIALS, visit https:// courageous patients, their caregivers, and the dedicated www.nih.gov/health-information/nih-clinical-research-trials-you. NIH staff treating them. Many NIH Clinical Center patients have rare diseases or diseases that don’t respond to other available treatments. Actor Jim Parsons is pictured with NIH Clinical Center staff. For these patients, the Clinical Center is often their last hope. The moving series highlights the human impact of NIH’s research and scientific work. “Big Bang Theory” and “Hidden Figures” actor Jim Parsons narrates the series, which was filmed over a one-year period. A history of hope For more than 60 years, the NIH Clinical Center—the world’s largest hospital dedicated to clinical research—has been at the forefront of developing treatments for deadly and damaging diseases. Located in Bethesda, Maryland, on the main NIH campus, the center has seen many medical firsts. These include chemotherapy first used to treat cancerous tumors, gene therapy undergoing its first human tests, and the first antiviral drug for HIV/AIDS meeting with early success. VIEW “FIRST IN HUMAN” For more information about “First in Human,” More Americans needed including where to view it, visit www.cc.nih.gov/ “With the attention now being drawn to the value of clinical ocmr/firstinhuman. research by ‘First in Human’ and other outreach efforts, I hope we can begin to build momentum to encourage more IMAGES: DISCOVERY/NIH CLINICAL CENTER DISCOVERY/NIH IMAGES:
6 Fall 2017 NIH MedlinePlus Solving the Undiagnosed Disease Puzzle at NIH
Q AND A Mystery illnesses are not just fodder for television. There are real, undiagnosed illnesses that are important to solve for public health. One way that NIH tackles mystery diseases is through its Undiagnosed Diseases Program. The program focuses on the most puzzling medical cases referred to the NIH Clinical Center in Bethesda, Maryland. It was founded in 2008. NIH leaders, including William Gahl, M.D., Ph.D., National Human Genome Research Institute’s (NHGRI) clinical experts studies a patient’s clinical and laboratory results for director and head of the program, recently did an “Ask Me important clues following the patient’s visit. Anything” discussion on Reddit. We thought we’d provide our own question and answer What are some of the program’s goals? overview for readers on the unique program. The program offers patients the hope of a diagnosis and the possibility of treatment strategies. In return, patients Who leads the program? provide researchers the opportunity to learn more about The program is organized by the National Human Genome diseases and what causes them. Research Institute, the NIH Office of Rare Diseases Research, and the NIH Clinical Center. How many patients are seen each year? While the program started at the NIH Clinical Center in As of 2014, the annual patient visit rate was 130. 2008, it expanded into a network of seven clinical sites How many cases are solved? throughout the U.S. in 2012. These sites are collectively The number of cases closed with no diagnosis is known as the Undiagnosed Disease Network. approximately 25 percent. However, the number of cases that What happens to a patient in the program? are pending diagnosis with strong leads is 60 percent. T The patient visits one of the Undiagnosed Disease Network SOURCE: National Human Genome Research Institute: www.genome. centers for about a week. During their visits, a large medical gov/27543155/udp-background/ team—with a deep base of knowledge about rare and www.genome.gov/27568204/2017-news-feature-reddit-ask-me-anything- common diseases—examines them. This team of NIH recap-the-undiagnosed-diseases network/
New Breast Cancer Treatment Approved
IN THE NEWS Breast cancer is the most common form of cancer in the U.S. According to the National Cancer Institute Chemical formula of neratinib (NCI), approximately 15 percent of patients with breast cancer have tumors that are HER2-positive. This summer, the U.S. Food and Drug Administration NCI estimates approximately 252,710 women will be approved a new breast cancer treatment that aims to diagnosed with breast cancer this year, and 40,610 will die of reduce the risk of the cancer returning. The drug, neratinib, the disease. This approval is a major step forward in helping is intended for patients with early-stage, HER2-positive to improve survival rates in some breast cancer patients. T
breast cancer. SOURCE: National Cancer Institute/Food and Drug Administration IMAGES: ADOBE STOCK, WIKIMEDIA COMMONS ADOBE STOCK, IMAGES:
Fall 2017 medlineplus.gov/magazine 7 CELIAC DISEASE
Gluten-free flours can be good alternative options for celiac patients, as long as they do not come boxed with seasonings. Make sure to check with a provider before
making any dietary changes. ADOBESTOCK IMAGE…:
8 Fall 2017 NIH MedlinePlus SOURCE: MEDLINEPLUS CELIAC DISEASE Going gluten free life with celac disease GoingGluten-Free Life with Celiac Disease
Celiac disease is a digestive condition and autoimmune disorder that affects the small intestine. Celiac disease can also affect the suspects you have dermatitis body outside the intestine. If a herpetiformis, a blood test and Celiac Disease or person with celiac disease eats intestinal or skin biopsy is needed Gluten Sensitivity? food with gluten, a protein found to diagnose celiac disease. If these naturally in wheat, barley, and rye, tests do not clearly confirm celiac his or her body creates an immune disease, a genetic test can help rule Some of the symptoms response that attacks the small it out. of gluten sensitivity intestine. Celiac disease can cause If you have celiac disease, you (also known as gluten long-term medical problems, such must follow a strict gluten-free diet. intolerance) are similar to those of celiac disease. as malnutrition or osteoporosis. This can include more than you Muscle Cramps They include feeling tired Some adults with celiac disease would expect. You should avoid all and stomachaches. It can have digestive problems such as foods that contain gluten, such as cause other symptoms intestinal discomfort or pain after most cereal, grains, and pasta, and including muscle cramps consuming gluten, but they are more many processed foods. You can eat and leg numbness. But likely to have headaches, depression gluten-free bread, pasta, and other gluten sensitivity does or anxiety, and other symptoms. foods that are now easier to find in not damage the small Fatigue Some people feel tired, have sore stores, restaurants, and at special intestine like celiac joints, or even get a rash. This skin food companies. You also can eat disease. rash, called dermatitis herpetiformis, potato, rice, soy, amaranth, quinoa, causes itchy bumps and blisters. buckwheat, or bean flour instead of Researchers are still Digestive symptoms are more wheat flour. learning more about common in children and can You also must consider the gluten sensitivity. If your Numbness include bloating, chronic diarrhea, products you use. provider thinks you constipation, gas, nausea, fatty For example, if a lip balm contains have it, he or she may stools that float, stomach pain, gluten, you are at risk of consuming suggest that you stop and vomiting. it. Some soaps or lotions also eating gluten to see if To treat celiac disease, a provider contain gluten, which could transfer your symptoms go away. must first diagnose it. Diagnosis can from your hands to your mouth. However, you should often be difficult, as celiac disease A gluten-free diet is the only first be tested to rule out Stomach ache symptoms are often similar to those treatment for celiac disease that celiac disease. of other conditions. Diagnosing has been approved and is safe celiac disease often begins with and effective. T SOURCE: MedlinePlus and Dept. of Health and a review of family history and a SOURCE: National Institute of Diabetes and Human Services Office on Women’s Health physical exam. If your provider Digestive and Kidney Diseases (NIDDK)
Fall 2017 medlineplus.gov/magazine 9 CELIAC DISEASE
Love and Life without Gluten: Rose and Jack Partners Rose and Jack approach celiac disease together
Rose’s story When Rose Perry was in high school, she developed a skin rash and didn’t know why. It was a complete mystery to her and her family. After six months, she finally knew what was wrong. A skin biopsy revealed she had dermatitis herpetiformis, which Tips for Following a then led to the diagnosis of celiac disease. She and her mom had to make a number of changes. Their Gluten-Free Diet work started in the kitchen. Eating a gluten-free diet can be overwhelming for newly diagnosed They got rid of all foods celiac patients. We’ve combined some fun gluten-free eating tips containing gluten in their “The from Rose Perry and Jack Gottschalk, as well as helpful advice from Joseph Murray, M.D., a gastroenterologist and internist. house. They also threw away food that had come into awareness of Serving Size: 6 great tips contact with gluten-containing celiac disease foods. Amount Per Serving Then Rose had to go and gluten-free
% Daily Value through her beauty products Isolate New Foods 100% and toss any soap, shampoo, diets has been When you try new foods, do it with one food at a time. This way, if or other products that both a blessing you have a negative reaction, you can pinpoint what food caused it. contained gluten. Since those Check Labels 100% products could come in and a curse.” Be sure to check food and product labels thoroughly. A food or contact with her mouth, they product may be labeled “gluten-free” but be sure to read the — Rose Perry ingredient list, and look for any warnings about how and where could cause accidental gluten the product was produced. exposure. Try Different Brands 100% “The idea was to eliminate Explore different brands. There are many gluten-free offerings everything that you could from things that you could touch, today, and you won’t know what you like until you try it. so that you wouldn’t have to worry about it,” she said. Explore Cooking at Home 100% Living at home, she had control. College was going to be Put on an apron and try some new recipes at home. It can be easier to avoid cross-contamination at home since you have different. As a student at Iowa State University, Rose had more control over the environment. to learn about the school’s resources for students living Ask Questions 100% gluten-free. She adapted to her new lifestyle. Stay aware when eating at restaurants, friends’ houses, or unfamiliar environments. If someone has made food you’re Jack’s story unsure of, ask what ingredients were used and what kind of environment it was made in. For some people, college is the best time of life. It wasn’t Keep Nutritious 100% for Jack Gottschalk. He felt too sick to enjoy himself. Be sure to check for other nutritional information. Often, gluten- “I felt sick all the time. I couldn’t eat anything and feel free foods can be high in sugar and other fats, and lack important good afterwards,” said Jack. nutrients like fiber. As a swimmer at York College in Pennsylvania, Jack often had pasta parties with his teammates. He never guessed IMAGE: ADOBESTOCK IMAGE:
10 Fall 2017 NIH MedlinePlus CELIAC DISEASE
Rose explained that often they will find a product labeled gluten-free, only to turn the package over and read that it was made in a facility that processes wheat. “It does lead to a lot more accidental exposures,” Rose said. “People will try something new thinking that it will be okay and it isn’t.” Over time, Rose and Jack have become used to their gluten-free lives. They hope others faced with the same diagnosis will not be too worried about the adjustment. “It’s not as bad as you think it is,” Rose said. Jack recommends that those who are newly diagnosed take time to explore new food options and be prepared for things like social Partners Rose Perry and Jack Gottschalk are gatherings. He says you should still both living with celiac disease. go to parties and get togethers—just bring your own food. “It’s really not a big deal, especially compared to the peace of mind you’ll that the delicious pasta was causing like, ‘Is that really necessary? Do you have knowing your food is safe,” him trouble. have to do that?’” Jack said. The summer before his senior Jack says it makes things easy to Rose and Jack enjoy busy lives. Rose year, Jack was diagnosed with celiac have an entirely gluten-free home. is a medical and scientific illustrator disease. It turns out that most pasta is Both he and Rose say they never have and Jack is a retail professional. primarily made with gluten. to worry about grabbing something Dealing with celiac disease is just He was surprised to learn that there out of the pantry to snack on. one aspect of their lives. T was only one treatment: Jack had to “I can live a totally normal follow a strict gluten-free diet. “There life within the confines of our isn’t really anything you can do for this,” home,” Jack said. “It fades into the he said. “You’re going to have to live background and you don’t even differently and that’s kind of a shock.” remember it half the time when you’re Find Out More at home because it’s not something Rose and Jack’s story you have to worry about actively.” ɖ MedlinePlus: The two have found, as so many Celiac Disease: medlineplus. Rose and Jack met in 2015. She was gov/celiacdisease.html attending grad school in Maryland, with celiac disease have, both where he lived. benefits and frustrations with the ɖ MedlinePlus Gluten In addition to their Maryland rise in people choosing a gluten-free Sensitivity: medlineplus.gov/ residency, it turns out they had one lifestyle. “The awareness of celiac glutensensitivity.html more thing in common. They both disease and gluten-free diets has have celiac disease. been both a blessing and a curse,” ɖ NIDDK: “It’s a huge advantage to have Rose said. www.niddk.nih.gov/health- a partner with the same dietary Since they were diagnosed, there information/digestive-diseases/ celiac-disease restrictions,” Rose said. “Knowing are many more foods they can that you have somebody who is eat. They are both happy with the ɖ NHANES Study: going through something similar and expanded gluten-free offerings and https://www.cdc.gov/nchs/ understands how serious it is, you’re accommodations they’ve found, but nhanes/index.htm not going to get questions all the time food labels can still be challenging. IMAGE: ROSE PERRY ROSE IMAGE:
Fall 2017 medlineplus.gov/magazine 11 CELIAC DISEASE
Exploring the Joseph Murray, M.D., is a gastroenterologist Celiac Disease and NIH-supported researcher working to answer critical Mystery questions about Research looks at what’s causing the celiac disease. rise of this autoimmune disorder
OST OF US KNOW SOMEONE on a gluten-free diet. But not all of us know someone who has no choice but to be on one. This is the case for those with celiac disease. It causes the immune system to attack a be consuming unnecessary calories and significantly more M added sugar when eating prepackaged, gluten-free foods. person’s small intestine if they eat gluten. “Patients who have celiac disease must avoid all gluten,” said Joseph Murray, M.D. “It’s not a choice. It’s Solving celiac mysteries a matter of medical need.” Dr. Murray is an internist and “Living gluten-free in our world is difficult,” Dr. Murray gastroenterologist at Mayo Clinic in Rochester, Minnesota. explained, which is why studies about celiac disease are so He receives funding support from the National Institute of important. Dr. Murray is working to answer some critical Diabetes and Digestive and Kidney Diseases. questions about celiac disease. Who gets it? Why do they A person with celiac disease who does not eat an entirely get it? Why has celiac disease become more common in our gluten-free diet could experience many medical issues, country and around the world? including abdominal pain, rashes, and even death. His work studying the Centers for Disease Control and Prevention’s National Health and Nutrition Choice vs. celiac disease Examination Survey and its data are starting to answer Dr. Murray said there are pros and cons to the rise in some of those popularity of a gluten-free diet for celiac disease patients. questions. “The efforts On the positive side, patients tend to have more gluten- For example, they free options at restaurants and in grocery stores. They also have found that one that have been don’t feel as strange about living gluten-free since it’s no in 141 Americans made to increase longer rare. has celiac disease. However, it’s also caused some people to take gluten-free Celiac disease is also medical awareness diets less seriously. more common in “The biggest problem is the fashion of the gluten-free northern states in the and testing for diet, because you might lose weight, for example,” Dr. U.S. and occurs more celiac disease are Murray said. “In that fashion or fad is loss of the real often in Caucasians. disease of celiac disease, which is a serious illness that Dr. Murray also working.” causes damage in the intestines.” learned that a One industry that can be particularly problematic is significant number — Joseph Murray, M.D. the food service industry. “They feel that they have been of people who have barraged with demands for lots of diets, many of which are celiac disease have not medically justified or necessary,” Dr. Murray explained. not been diagnosed. However, the number of diagnoses “And one of those is a gluten-free diet. When they’re has gone up in recent years. faced with a patient with celiac disease, they don’t often “The efforts that have been made to increase medical recognize that that patient is facing a real medical need.” awareness and testing for celiac disease are working,” he said. The problems with the rise of gluten-free by choice don’t He is also working on a study focused on refractory celiac end with those with celiac disease either. disease, which is when the small intestine continues to be Dr. Murray warned that many people who eat an damaged despite the individual going on a gluten-free diet. unnecessarily gluten-free diet are missing out on important “That’s at the very sharp point of the worst of celiac disease T nutrients like fiber and whole grains. Additionally, they may and consequences,” Dr. Murray said. IMAGE: MAYO CLINIC MAYO IMAGE:
12 Fall 2017 NIH MedlinePlus HEARING LOSS EXPANDING Hearing Health Care Addressing an urgent public health need
“What’s that you said?” Other Communication Disorders specializes in ear surgery and Perhaps you’ve heard yourself say (NIDCD). health care for people with hearing those words more often than you’d Hearing health care affordability disorders. She says that if hearing like to admit. Or maybe you, a and accessibility is an urgent public loss is not treated, it can result in family member, or a friend is health problem. Nearly 37.5 million serious health, social, and consistently turning up the TV adults in the U.S. report hearing loss financial problems. volume or can’t follow simple in one or both ears. This number “People with hearing loss have a conversations in restaurants. is rising as the number of senior higher risk of falls, depression, and If you are age 70 or older, this is citizens increases. hospitalization. They also have more common. Mild- to-moderate hearing “Hearing loss is a hidden disability difficulties accessing health care,” loss affects more than 60 percent of that usually occurs gradually over Dr. Tucci says. Hearing loss has also 70-year-olds, and more than time, so it’s often hard to know how been associated with a higher risk of 80 percent of 80-year- much hearing loss you have or how social withdrawal and dementia in olds have hearing loss, much you’re missing,” says older adults. according to Debara Tucci, M.D., of Duke Of the millions of adults who NIH’s National University. could benefit from hearing aids, only Institute on An NIDCD-funded 25 percent has actually used one, Deafness and researcher, Dr. Tucci according to NIDCD. PHOTO: ISTOCK PHOTO:
Fall 2017 medlineplus.gov/magazine 13 HEARING LOSS
Dr. Debara Tucci, M.D., examines a patient’s ear. Social stigma purchase the devices from one of F. Battey, Jr., M.D., Ph.D. “We support these hearing health providers, who studies not only on how we hear, but There are many reasons why people would fit you for the hearing aids also on technologies to help people with hearing loss don’t use hearing and adjust them for your needs. They hear better and on delivery models to aids. One reason is that there is a might also counsel you and family get hearing loss interventions into the stigma associated with them. members about how to adjust to hands of the people who need them.” “People often see hearing aids as hearing loss. a sign of being old, so they avoid Audiologists are health care getting the help they need,” Dr. providers with advanced degrees who “Over the counter Tucci says. Before seeking medical have special training in hearing and treatment, most hearing aid users balance disorders. Hearing instrument is a good option for have lived with hearing loss for more specialists are state-licensed than 10 years, and their hearing has professionals. The requirements vary people who think they become worse over time. among states; most states require have hearing loss” Hearing aids, provider visits, and completing a two-year apprenticeship. other hearing care treatment can As hearing aids have moved from — Larry Humes, PH.D. also be very expensive. Medicare and analog to digital components, the Medicaid offer limited to no coverage options for different settings have One study recently found that for hearing aids, which can cost up to expanded substantially. In addition, participants who selected pre- $3,000 per aid. the settings on the hearing aids can be programmed hearing aids using an adjusted more easily. In some cases, over-the-counter delivery model Affordability and the user can adjust the settings. reported a similar level of benefit as accessibility Researchers have been exploring participants who purchased the same Why the high cost? In most cases, why many people don’t get the help hearing aids through an audiologist the price of the hearing aid includes they need and whether there are ways following best practices. the services of a hearing health to ensure that more adults with mild- The audiology services included professional. to-moderate hearing loss get hearing fitting the hearing aids and counseling Currently, if you think you need health care. the consumers on how to use them. hearing aids, you must first visit an “The NIDCD has a long history of The study is the first randomized, audiologist or hearing instrument research and discovery in hearing double-blind, controlled clinical trial specialist to be tested. You would then health,” says NIDCD Director James to compare the effectiveness of two PHOTO: DUKE UNIVERSITY PHOTO:
14 Fall 2017 NIH MedlinePlus HEARING LOSS
service-delivery models of hearing aids. way for people to try out the hearing aids at low cost. As their Larry Humes, Ph.D., professor of speech and hearing hearing needs become more complex, they may then go to a sciences at the University of Indiana, is the lead professional to get more assistance.” researcher on the study. “I’m excited about the research results,” Dr. Humes says. “I’d like more hearing aids to be Beyond hearing loss available to consumers.” Using hearing aids to improve hearing is not as simple as On August 18, 2017, a new law was established that will putting on a pair of reading glasses to see better. provide more options for some adults with hearing loss. “People think they can just use a hearing aid and they will The law gives the Food and Drug Administration (FDA) have 20-20 hearing, like they do with eyeglasses,” says Dr. three years to create standards for safety, effectiveness, and Humes. “The problem with older adults and hearing loss is labeling of over-the-counter hearing aids. This new law a little more complex.” was a provision in the FDA It takes weeks or months to Reauthorization Act of 2017. get used to the louder sound Over-the-counter “We support studies not from hearing aids. And treating hearing aids would be a hearing problem involves FDA-approved for adults only on how we hear, but adjustments for the inner ear with perceived mild-to- and the brain. “The convenience moderate hearing loss. also on technologies to of over-the-counter hearing aids Consumers would not need is good, but older people must to see licensed hearing help people hear better.” not have expectations that they professional to purchase — NIDCD Director James F. Battey, Jr. will hear like a 20-year-old again certain hearing aids. as soon as they put on their Advocates of the law hearing aids,” Dr. Humes says. expect the cost of the hearing aids will be much lower Adults with perceived mild- to-moderate hearing loss than hearing aids sold through current service delivery are encouraged to check out low-cost hearing care options models. when they become available. And, if you are over 65, a visit FDA is developing language to help consumers with an audiologist should be within reach. determine if they are a good candidate for these devices, “I encourage everyone over age 65 to see their primary or if they have symptoms that suggest that they should care doctor and get a referral to an audiologist for a hearing see a health care professional. test, which is covered by Medicare,” advises Dr. Tucci. “This “Over the counter is a good option for people who think is the best way to determine if you have hearing loss and to they have hearing loss,” says Dr. Humes. “It’s an affordable prevent other health issues related to hearing loss.” T
Hearing aids come in many shapes and sizes. What are Over-the-Counter Hearing Aids?
ɠ Consumers will be able to purchase them at a store or online, with or without the assistance of a licensed provider.
ɠ Will provide a new, affordable, and easily accessible option for adults with perceived mild- to moderate hearing loss.
ɠ Will be regulated by the Food and Drug Administration with clear labeling for usage, safety, and effectiveness. PHOTO: ISTOCK PHOTO:
Fall 2017 medlineplus.gov/magazine 15 HEARING LOSS
Helping others hear better Turning first-hand experience into hearing loss advocacy
Lise Hamlin was born with hearing loss in one ear, though America. The Association she was able to communicate adequately for 30 years. has many resources and That changed overnight. opportunities for people One morning, when she was in her mid-30s, Lise woke up with hearing loss to help and suddenly realized she couldn’t hear at all. one another. She was scared but didn’t panic. “I thought that if I lost my “I realized that people hearing overnight, it would come back overnight,” she says. actually like talking about But her hearing didn’t come back. The only way she was their disabilities if they able to hear people was if admit they have one,” they yelled. she says. She started “We are social Six months later, she got a volunteering for the hearing aid. association and eventually Lise Hamlin’s hearing loss experience people. We need When Lise suddenly lost was offered her dream led her into a career of advocacy. her ability to hear, she faced job there. to communicate. new challenges. “I wanted Lise is now the director of public policy at the Hearing to be with my family and be Loss Association of America. She works with Congress and Everyone should social. But I was missing the federal communications agencies to make communication jokes,” says Lise. accessible and affordable for people with hearing loss. have access to She recalls feeling self- Lise says she receives nearly 10 calls a day from people conscious in social situations looking for affordable hearing aids. hearing care.” while wearing her hearing aid, “It’s heartbreaking,” she says. “We are social people. We which was “brown and ugly.” need to communicate. Everyone should have access to — Lise Hamlin “There was a stigma with hearing care.” having a hearing aid, but now Lise recently had surgery and now has a cochlear implant I know it was more of a self-esteem issue,” she says. “Now in one ear and a hearing aid in the other ear. “I live a full life I tell people that I have hearing loss, and they are almost now,” she says. “If you know you have hearing loss, don’t always willing to work with me.” bluff, do something about it. Once you deal with it, your life Lise sought help at the Hearing Loss Association of will be so much easier.” T
Signs of Mild-to-Moderate Hearing Loss Here are some signs that you may have mild-to-moderate hearing loss:
Muffling of speech Needing to turn up the If you experience any of these, you and other sounds volume of television, may want to see an audiologist or radio, or music otolaryngologist (an ear, nose, and throat specialist) or an audiologist for a hearing evaluation.
Trouble hearing in Asking others to speak For more information on signs of hearing groups or noisy places, more slowly, clearly, loss and treatments, visit https://www. or when you can’t see and loudly, or to repeat nidcd.nih.gov/. who is talking what they said
IMAGE: HEARING LOSS ASSOCIATION OF AMERICA OF AMERICA ASSOCIATION HEARING LOSS IMAGE:
16 Fall 2017 NIH MedlinePlus HEARING LOSS
A Journey with Mid-life Hearing Loss Stephen Ferranti addressed Don’t wait to seek help for hearing loss early. hearing issues
TEPHEN FERRANTI “What triggered it for me was that get used to the hearing aids, because knew he had to address his I was working in an environment the devices allowed him to hear high hearing loss issues when where 50-year-olds are not the frequency sounds that he hadn’t heard he realized it could affect majority,” he says. “Most of the in a long time. “Your brain needs to Shis job. As a product strategy manager people I work with are young, and adjust to the new normal,” he says. in his mid 50s working for a financial they have perfect hearing.” Social situations became easier. “I software company in New Hampshire, His doctor suggested that Stephen was tired of apologizing for my age Stephen found himself nodding in see an audiologist. Audiologists are and my hearing. I’m not afraid to agreement with colleagues, but not health care providers who focus on point out that I wear hearing aids and knowing what they were actually hearing and balance disorders. His eyeglasses,” says Stephen. Best of all, saying. audiologist told him he had typical he keeps up with conversations in “I work with a lot of startup hearing loss of people in their early noisy places. companies and with 20-something- 70s, although most people don’t Stephen’s advice to anyone with address the issue until they are perceived mild-to-moderate hearing much older. loss is to seek help immediately: “Own “I was tired of “He told me I was one of the lucky it. It’s not 100 percent like your old apologizing for my ones, because I addressed my hearing hearing, but it’s much better than issues 15 years earlier than most before.” T age and my hearing.” people do,” Stephen says. — Stephen Ferranti The audiologist report gave Stephen two options: do nothing or get Find Out More year-old millennials who tend to have hearing aids. After much research, a lot of social and business gatherings Stephen found a few options ɖ MedlinePlus: Hearing Loss: in noisy restaurants and cocktail bars,” available for the type of hearing aids medlineplus.gov/ency/ he says. he needed. article/003044.htm When presenting at conferences or “Unfortunately, the type of hearing ɖ NIDCD Hearing Loss: talking with colleagues and clients in aids I needed were not covered by my www.nidcd.nih.gov/health/ busy restaurants, he found himself medical insurance,” he says. “They statistics/quick-statistics- agreeing to do tasks for colleagues or were expensive. I am fortunate that hearing saying “yes” to high-end customers who I can pay for them, but I know many ɖ NIDCD Hearing Aids Fact had not asked a ‘yes’ or ‘no’ question. people can’t afford them.” Sheet: “It was embarrassing,” he says. https://www.nidcd.nih.gov/ Stephen realized that not being able The new normal health/hearing-aids to hear people would affect his job and Stephen has been wearing his ɖ Hearing Loss Association of career. He needed to do something hearing aids for almost three years America: about his hearing before it became a now, and is very happy with his choice. hearingloss.org big problem. He says it took a couple of months to IMAGE: IAN MACLELLANIMAGE:
Fall 2017 medlineplus.gov/magazine 17 Breathtaking Managing a COPD Diagnosis
Chronic obstructive pulmonary disease (COPD) is a serious lung disease that makes it hard to breathe. It’s also known as emphysema or chronic bronchitis.
In people who have COPD, the airways—tubes that carry air in and out of your lungs—are partially blocked. This makes it hard for air to get in and out. COPD causes symptoms such as coughing, mucus, wheezing, shortness of breath, and chest tightness. These symptoms tend to worsen over time. Severe COPD may prevent you from doing even basic activities like walking, cooking, or taking care of yourself. Cigarette smoking is the leading cause of COPD. However, up to 25 percent of people with COPD never smoked. Exposure to other lung irritants— such as air pollution, chemical fumes, or dust—may contribute to COPD. A rare genetic condition called alpha-1 antitrypsin deficiency can also cause the disease—but it is rare. Most of the time, COPD affects middle-aged or older adults. Some COPD patients wait to seek help as symptoms such as increased shortness of breath may seem like a natural part of aging. If you are or a loved one suspects that you have COPD symptoms, make sure to see a health care provider. There is no cure and doctors do not know how to reverse the damage to the lungs. But treatments and lifestyle changes can help patients feel better, stay active, and slow the progression of the disease. T SOURCE: National Heart, Lung, and Blood Institute (NHLBI) and MedlinePlus PHOTO: ISTOCK PHOTO:
18 Fall 2017 NIH MedlinePlus CHRONIC OBSTRUCTIVE PULMONARY DISEASE
Have the genetic research efforts on COPD NIH Launches improved in recent years? Understanding the causes of COPD is complex. Genetic National COPD research efforts—for example in the NHLBI COPD Gene program—are highlighting specific traits associated with Action Plan COPD. These approaches are becoming more powerful as more studies are included in the analyses. Breathtaking James P. Kiley, Ph.D., is the director of More needs to be done to understand how these genes interact with the toxicants, like cigarette smoke, that the Division of Lung Diseases at NIH’s cause COPD. National Heart, Lung, and Blood The most direct connection remains with the deficiency Institute (NHLBI). In 2017, NHLBI of the protein alpha-1 antitrypsin, a blood protein that limits inflammation in the lungs. People who lack a launched a national action plan functional alpha-1 antitrypsin protein are at greater risk on COPD to empower patients and of developing COPD—with and without exposure to support COPD research and education. cigarette smoking. Dr. Kiley, who helped lead the launch, answered questions for NIH “While there is no cure for COPD, MedlinePlus magazine. optimal medical therapy can Why was the COPD National improve the symptoms and the Action Plan created? The staggering numbers associated with COPD highlight quality of life for patients.” the need for a coordinated national approach to deal with the critical issues around this chronic disease. This is the — James P. Kiley, Ph.D. first-ever blueprint for a multipart, unified fight against the disease. It was developed at the request of Congress, with Beyond genetics, have there been any other input from the COPD community. important NIH-supported research studies Eight of 10 cases of COPD are caused or findings on COPD in recent years? by smoking. Why hasn’t that statistic NHLBI funds a wide range of research directed toward the changed in a while? reduction of COPD cases and COPD-related death: Cigarette smoking rates have been going down, but COPD ɠ Some additional research is looking at the causes of takes 20 to 30 years to show its symptoms. We are now COPD on the molecular level. For example, recent data seeing the effects of smoking that go back two or three suggest that the lengths of telomeres, the DNA sequences decades ago, when smoking rates were much higher. at the ends of our chromosomes that shorten with aging, might be associated with COPD. Women make up 56 percent of COPD cases, ɠ Cohort studies such as COPDGene and SPIROMICS, while men make up 44 percent. Why is that? which follow COPD patients as they age and their disease We know that more women die from COPD than men. progresses, are helping us to understand the complexities Several factors could be responsible. Men and women are and possible pathways of the disease. Investigators biologically different. They may respond differently to the recently found that there is a large group of smokers toxic substances that cause COPD. Also, women survive and ex-smokers who do not have lung obstruction, and longer with COPD than men. therefore are not diagnosed with COPD, but nevertheless suffer from respiratory symptoms.
Fall 2017 medlineplus.gov/magazine 19 CHRONIC OBSTRUCTIVE PULMONARY DISEASE
What is pulmonary rehabilitation and why is it important for COPD patients? Pulmonary rehabilitation is a treatment for patients with chronic lung diseases like COPD. It provides patients with exercise, education, and support. The primary goal is to help patients achieve their maximum level of independence and functioning. It benefits exercise tolerance, symptoms, and quality of life, with a reduction in the use of health care resources. Pulmonary rehabilitation involves a long-term commitment from the patient and a team of health care providers. The team may include respiratory therapists, physical and occupational therapists, dietitians or nutritionists, and psychologists or social workers. Patients In May, the first COPD National Action Plan was announced by (left to right) Grace Anne Dorney Koppel, president of usually receive care at an outpatient program in a hospital the COPD Foundation; MeiLan K. Han, M.D., M.S., medical or clinic. T director of the Women’s Respiratory Health Program at the University of Michigan Health System; and James P. Kiley, Ph.D., director of the Division of Lung Diseases at the NIH’s National Heart, Lung, and Blood Institute.
ɠ We are supporting clinical trials through the NHLBI COPD Pulmonary Trials Cooperative. These will determine by the Numbers whether drug treatment helps COPD patients who do not have lung obstruction. They will also test interventions Chronic obstructive pulmonary disease in COPD patients who are overweight and those with (COPD) is the third leading cause of death prevalent emphysema. in the U.S., behind heart disease and cancer. ɠ NHLBI, as part of the Tobacco Regulatory Science Program, is supporting research to understand whether other tobacco products (cigars, hookah, e-cigarettes) In 2014, COPD killed lead to chronic lung diseases. more than 150,000 ɠ Americans. NHLBI-funded investigators are looking at diseases THOUSAND150 that can happen at the same time as COPD, like cardiovascular disease, high blood pressure, arthritis, depression, and asthma. They are trying to understand 16 million Americans have how these diseases associate with and influence COPD. been diagnosed with COPD. Millions more have Why is it important to tell your primary-care MILLION16 the disease but don’t know it. health provider about tobacco use, either by you or by someone you live with? The disease is the Cigarette smoke is the best-known cause of COPD. In fourth leading cause addition to COPD, cigarette smoking is a known cause of of disability in the U.S. other conditions such as heart disease and lung cancer. #4 Quitting smoking is known to slow the progression of COPD and reduce your risk of death. The cost of COPD-related Like all chronic addictions, quitting smoking usually patient care is projected to requires teamwork between the patient and the primary- hit $49 billion by 2020. care health professional. Medical and behavioral support $49BILLION are often needed together for a successful outcome. Primary-care health professionals can direct the patient SOURCE: National Heart, Lung, and Blood Institute (NHLBI)
to helpful resources. (NHLBI) INSTITUTE AND BLOOD LUNG, HEART, NATIONAL PHOTO:
20 Fall 2017 NIH MedlinePlus CHRONIC OBSTRUCTIVE PULMONARY DISEASE Too ‘Stubborn’ to Give in to COPD Jim Nelson fights COPD with determination and advocacy
“I was blessed with a fine case of the ‘stubborns’’’ says Jim Nelson, a 77-year-old retired accountant living in Arizona with his wife of Jim and Mary Nelson are pictured on a recent trip to Stonehenge in the United Kingdom. 50 years, Mary. It was his stubbornness and I was 55 years old by this time and in Bethesda, Maryland. Mary’s support that got him through hadn’t smoked in 20 years. But my We are trying our best to give withdrawal from cigarettes and lung function was dismal: 33 percent back. We are helping a lot of people helped him deal with his COPD. His of what it should have been. by spreading awareness about lung commitment to exercise and good Predictably, my lungs continued to disorders to help people with COPD health helped him qualify for a double get weaker and my breathing became get through their days. However, we lung transplant at the age of 71. more labored. But the “stubborns” would be less than honest if we didn’t Jim provided a first-hand account took over again. I learned all that I admit that it still helps us, too. T of his experience with could about my disease to better deal NIH MedlinePlus magazine. It with it. I vowed to become the rare has been edited COPD patient who for space. exercises religiously, Find Out More Even though “I set out to learn talks about COPD I smoked for ɖ MedlinePlus: to anyone who will 20 years, I was medlineplus.gov/copd.html all that I could listen, and who active when I anticipates dying ɖ National Heart, Lung, and was younger. I about my disease to with the disease, Blood Institute—COPD: enjoyed hunting better deal with it.” rather than because www.nhlbi.nih.gov/health/ and fishing in health-topics/topics/copd/ of it. the Colorado — Jim Nelson I became involved ɖ COPD National Action Plan: mountains and with the American https://www.nhlbi.nih.gov/ boating on nearby Lung Association health-pro/resources/lung/ lakes. But that changed when I was in as a teacher and inspirational copd-national-action-plan my 50s. speaker. Mary and I also work with ɖ National Heart, Lung, and After I had repeated lung infections the national COPD Foundation as Blood Institute—Clinical over the years, the Veterans Arizona Advocacy Captains. We have Trials: Administration hospital in Grand developed classes on living with and www.nhlbi.nih.gov/health/ Junction, Colorado, gave me my dealing with lung disease for patients health-topics/topics/copd/trials first pulmonary function test. I was and caregivers. ɖ American Lung Association: diagnosed with severe COPD, the We help spread awareness and www.lung.org third of four stages of the disease. work to improve communication The doctors told me I’d continue to ɖ COPD Foundation: between the medical community and www.copdfoundation.org lose lung function. They also told me the COPD community. And we were I should begin using supplemental recently invited to participate in the oxygen for sleeping and exercising. PHOTO: JIM NELSON PHOTO: COPD Town Hall at the NIH campus
Fall 2017 medlineplus.gov/magazine 21 ASTHMA
OUTRUNNING ASTHMA Football player Rashad Jennings battled childhood asthma with exercise and determination National Football League (NFL) running back and reigning “Dancing with the Stars” champion Rashad Jennings battled childhood asthma with grit and determination. He has partnered with the Allergy and Asthma Foundation of America to raise awareness about the widespread condition. You developed asthma as a child. Tell us about your experience. It was something that I struggled with throughout my childhood. I was 10 years old when I had my first asthma attack. I’ll never forget it—I was playing on the monkey bars with my friends, and I fell to the ground. I Rashad Jennings with his “Dancing with the Stars” was dependent on an inhaler daily. And it prevented me from running partner, Emma Slater, in 2017. and other activities. After my second major asthma attack, when I was 13, I was hospitalized and nearly died. I couldn’t breathe.
22 Fall 2017 NIH MedlinePlus ASTHMA
“It’s hard to raise our kids up to their full potential if they are struggling to breathe.”
— Rashad Jennings
You overcame asthma to play professional football in the NFL and win “Dancing with The Future of the Stars.” How did you educate yourself and gradually strengthen your lungs? Asthma Monitoring The doctor suggested that I not play sports. But I was With so many pollutants indoors and outdoors, hard-headed. I strengthened my lungs little by little by determining what triggers asthma in children is running. I also improved my diet. not easy. Now, NIH-supported researchers are For the past 10 years, I haven’t had any asthma symptoms. developing technology to help identify those triggers I haven’t had to use inhalers. I live a very healthy life. more easily. New research supported by the National Institute Did you have any environmental factors at of Biomedical Imaging and Bioengineering (NIBIB) home that impacted your asthma? uses biosensors to gather data about environmental My dad smoked heavily. That was part of the reason my and other factors involved in childhood asthma. asthma was so bad. To this day, I hate the smell of smoke Biosensors are devices that detect and measure and I stay away from places where I could encounter it. biochemical changes within the body. Technology then turns those signals into helpful data, which What is your message to others with asthma? experts can analyze to learn about our health. I have a special message for kids. I want them to know These asthma biosensor systems monitor what that because you have asthma doesn’t mean you children are exposed to and their body’s reactions. are asthma. It is something you can overcome. It is Zhenyu Li, Ph.D., a biomedical engineer at George something you can live with. I am a living example of Washington University, is engaged in the research. that. By taking the proper measures you will get strong; He and his team are developing a sensor that can you will get better. be worn on a child’s wrist to detect formaldehyde, an I also encourage you to exercise. If you put in the right air pollutant that can trigger asthma. work ethic about anything, you will succeed. “Researchers don’t have tools at the moment that I’m proud that the Rashad Jennings Foundation can monitor environmental triggers, physiological promotes health and fitness and reading and education responses, and behavior without interrupting normal as well as mentorship for kids. activities,” Dr. Li said. He expects to have a wearable sensor prototype that can be tested soon. How important is additional research, like Dr. Li’s team is also working on a device that can that supported by NIH, to help those with be placed in a child’s home to detect multiple air asthma? pollutants, like those found in tobacco smoke and Research is critical. The number of people who suffer some manufactured wood products, such as flooring from asthma is astronomical. We also need to do more to and furniture. T educate people about asthma. It’s hard to raise our kids up SOURCES: NIH News in Health and National Institute of to their full potential if they are struggling to breathe. T Biomedical Imaging and Bioengineering (NIBIB) PHOTO: GETTY IMAGES, RASHAD JENNINGS FOUNDATION, ABC GETTY PHOTO: RASHAD JENNINGS FOUNDATION, IMAGES,
Fall 2017 medlineplus.gov/magazine 23 ASTHMA
“The time to get worried is if you start feeling wheezy, have a cough, chest heaviness, or shortness of breath that prevents you from doing normal activities.”
- STAVROS GARANTZIOTIS, M.D.
bodies, and how that affects asthma activity. We gather samples from participants’ homes and their bodies, including phlegm, saliva, and stool samples. We are following asthma patients over a long period of time, five years at the minimum. These patients include those who have recurrent symptoms and have moderate to severe Stavros Garantziotis, M.D., is the lead researcher on NIH’s asthma. We offer free care and free medications for study Natural History of Asthma with Longitudinal Environmental participants. In that way, we can also give back to the Sampling study. community through the study. How can patients tell if it’s just allergies or asthma? There is certainly an overlap. The immune system response that causes you to have allergies plays a role in getting Understanding asthma. But while most patients with asthma have allergies, most patients with allergies don’t have asthma. The time Asthma from the to get worried is if you start feeling wheezy, have a cough, chest heaviness, or shortness of breath that prevents you from doing normal activities. These are signs that it is not Inside Out just a simple allergy. NIH study looks at the microbiome’s role How do you suggest approaching potential triggers with children? Three NIH institutes fund asthma studies to improve In terms of medication, you should use as much as necessary treatment and learn more about what causes this and as little as possible. When you can influence asthma widespread illness: the National Institute of Allergy and symptoms by changing something in the environment Infectious Diseases (NIAID); the National Heart, Lung, that’s always the preferred way. Some scientists think that and Blood Institute (NHLBI); and the National Institute of keeping our children’s environment too clean may prevent Environmental Health Sciences (NIEHS). their immune system from learning to discriminate what NIH MedlinePlus magazine sat down with pulmonologist is harmful and what is an innocent exposure. That may Stavros Garantziotis, M.D. to discuss one such study. He be a reason why allergies have become more common. I is a lead researcher on the Natural History of Asthma with encourage my own children to play outdoors and that’s Longitudinal Environmental Sampling (NHALES) trial. The especially important when they’re young. trial is supported by NIEHS. Dr. Garantziotis and his team still need people to participate in this study, which is based What should you do if you think you may have asthma? in North Carolina. To learn more, visit clinicaltrials.gov and Discuss your symptoms with a provider. Not every type of search “NHALES.” asthma needs intensive treatment. We always try to improve asthma both by changing the What are the goals of the NHALES study? immune response (through medications, diet, etc.) and by There are two goals, both scientific and community-based. identifying and removing the environmental triggers that The scientific side is to try to understand the microbiome, cause the immune response. T or the microbial makeup of our environment and our PHOTO:NATIONAL INSTITUTE OF ENVIRONMENTAL HEALTH SCIENCES HEALTH OF ENVIRONMENTAL INSTITUTE PHOTO:NATIONAL
24 Fall 2017 NIH MedlinePlus ASTHMA
A Lifelong Asthma Struggle NIH study helps Jeff Long battle illness eff Long, Ph.D., can hardly remember a time when he didn’t suffer from serious asthma. Jeff, who is now in his 50s, started experiencing symptoms when he was just a child. J“I remember participating in sports in elementary school and being very short of breath. It got worse and worse over time,” he said. While some people have one or two asthma triggers, Jeff Long with his son Noah, wife Deb, and daughter Gabi. Jeff had many. In addition to pollen, cold and dry weather, cat dander, and exercise were all potential triggers for Jeff. His hometown also had factories and with them, pollution. started seeing a doctor regularly thanks to her suggestion. Jeff’s symptoms included shortness of breath and “When I did have a flare-up, my physician would treat difficulty breathing. He often had major attacks that could things more quickly than I did trying to treat it myself,” Jeff last as long as an hour or two, usually said. “The intervention was much earlier.” after exercising. Jeff is now participating in an NIH study. “In the fall, my asthma would start to NIH’s NHALES, or Natural History of flare up and then I got other things, like “As part of Asthma with Longitudinal Environmental secondary bronchitis. One time, in high Sampling, is helping Jeff learn more about school, I even got pneumonia,” Jeff said. the study, my his condition and help others with asthma. Jeff’s family struggled with how to treat understanding “My experience with the study has been his condition. He grew up in a small town fantastic,” Jeff said. “It has been helpful for in Illinois, where his parents didn’t have of asthma has many different reasons.” Until this year, Jeff many choices for his medical care. had been on and off antibiotics for 15 years “I think I was prescribed some sort had a major due to asthma. Now, he takes a combination of inhaler, but many of the symptoms of an inhaled steroid and an inhaled were managed with over-the-counter shift.” bronchodilator, which helps relax tightened medicines,” he said. He also tried air passageways during an attack. — Jeff Long, Ph.D. pushing through the symptoms, by His doctor and the study’s lead running and staying active, but he kept researcher, Stavros Garantziotis, M.D., experiencing asthma symptoms. also diagnosed another condition. Jeff has As an adult, he tried to treat his attacks as they bronchiectasis, a condition in which the lungs’ airways happened, but he never felt like he had a handle become damaged. This makes it hard to get rid of mucus. on his asthma. That changed when he moved to San The condition was a result of scar tissue from pneumonia Antonio, Texas. Jeff had when he was 2. “Probably the worst place for my asthma was south “This explained some odd flare-ups I had in the past,” Texas, where there were live oaks and cedar trees,” Jeff Jeff said. “It has also changed, to some degree, the said. “I got very ill. It got to the point where I was taking a management of my asthma flare-ups going forward.” couple of Benadryl pills a day.” Jeff has strengthened his approach to treating asthma Ultimately, though, San Antonio had a positive effect on as a chronic illness through participating in the NHALES Jeff’s allergy treatment though. It was there that he met study. “As part of the study, my understanding of asthma his now wife, Deb. She is a pulmonologist, a doctor who has had a major shift. Instead of looking at this as a treats asthma. Even though Deb didn’t treat Jeff herself, he problem that surfaces a couple of times of year, I’m seeing
PHOTO: COURTESY OF JEFF LONG COURTESY PHOTO: and treating it as a chronic condition,” he said. T
Fall 2017 medlineplus.gov/magazine 25 ASTHMA
Asthma: What You Need to Know Indoor Allergens & Asthma Asthma is now the most common chronic disorder in What steps can you take to reduce indoor allergens childhood. In the U.S., nearly 24 million people have asthma. and prevent asthma attacks? Asthma often occurs early in life, but it can also occur for the first time in adulthood. Some patients can also “outgrow” asthma at first, but then develop symptoms again later in life. Use HEPA air filtration devices to reduce airborne allergens. What is asthma? Change HVAC filters at least once Asthma is an inflammatory disease of the lung. It can occur every quarter, or more frequently along the entire airway from the nose to the lung. Once the if your home has a lot of dust. airway becomes swollen and inflamed, it becomes narrower, and less air gets through to the lung tissue. The exact cause of asthma is not known. Researchers think some genetic and environmental factors interact to cause asthma, usually Wash sheets and blankets before the age of 5. in hot water every week. What are the symptoms of asthma? Wheezing, coughing, chest tightness, and trouble breathing. During an asthma attack, the muscles around the airways tighten up, more mucus is produced, and asthma symptoms Put mattresses, pillows, and become worse. box springs in allergen-proof covers. Are allergies related to asthma? Yes. Asthma can be triggered by substances in the environment called allergens. Some indoor allergens come from dust mites, cockroaches, dogs, cats, rodents, molds, and fungi. Outdoor allergens include pollen from many trees, weeds, and grass. Even food allergies can cause asthma symptoms. Vacuum carpets and upholstered furniture What about air pollution outside? every week. Outdoor pollution plays a major role, as does cigarette smoke. Children exposed to pollution are more likely to develop asthma. Asthma patients are more likely to have their asthma flare up when they are exposed to pollution. Eliminate pest infestations This is why asthma patients should not exercise outdoors to reduce cockroach or mouse during high-pollution days, for example when there is a allergen exposure. code-orange ozone day. How is asthma treated? Treatment plans can include taking prescribed medicine Reduce humidity to under 50% and avoiding your asthma triggers. You can breathe in and check for leaks/water damage some medicines and take other medicines as a pill. Asthma to reduce mold. medicines come in two types—quick-relief and long-term control. Quick-relief medicines control the symptoms of an asthma attack. Long-term control medicines help you have fewer and milder attacks, but they don’t help during an Limit dog and asthma attack. T cat exposure in SOURCES: National Institute of Environmental Health Sciences; the home. National Heart, Lung, and Blood Institute; National Institute of Allergy and Infectious Diseases; and the Centers for Disease Control and Prevention ISTOCK ADOBESTOCK, PHOTOS:
26 Fall 2017 NIH MedlinePlus ASTHMA
Don’t Let Asthma Define You Sylvia Granados-Maready
uses her competitive edge Sylvia Granados-Maready, right, is pictured with her against condition newborn son, Peter Ernesto, and her sister, Sandra. hen Sylvia Granados- Maready was born, she activities far more challenging than some life milestones, like giving birth, was diagnosed with they were. She finds herself feeling Sylvia stays positive. asthma. To this day, motivated just to keep up at the gym. She said, “You have to learn to WSylvia lives with asthma without “Some people might be super love yourself with asthma and realize letting it define her. self-conscious about their bodies that there is still a future, with or “All my life, I’ve had asthma,” she when they’re going to the gym,” she without it.” T said. “If you’ve got that competitive said. “For me, it’s wondering if I edge, accept it but know your limits.” can keep up with the person next to She let her competitive ambitions me that’s running.” Find Out More shine in middle school and high To treat her symptoms, which school by participating in sports. worsen in the spring and winter, she ɖ MedlinePlus: uses two medications. The medlineplus.gov/asthma.html “You have to learn to love first is a bronchodilator, which ɖ National Institute of opens breathing passages Environmental Health yourself with asthma and and relaxes muscles. She Sciences: realize that there is still a administers it with a nebulizer www.niehs.nih.gov/health/ and an inhaler, as needed. She topics/conditions/asthma/ future, with or without it.” also takes a steroid through an index.cfm inhaler every day. ɖ National Institute of Allergy - Sylvia Granados-Maready Sylvia gave birth to her first and Infectious Diseases: child this April and asthma www.niaid.nih.gov/diseases- caused some issues during conditions/asthma Though her asthma was less severe her pregnancy. In her third trimester, ɖ National Heart, Lung, and when Sylvia was in her teens, there she experienced shortness of breath Blood Institute: were times when it was tough. doing day-to-day activities such as www.nhlbi.nih.gov/health/ Sometimes she needed to stop playing walking up stairs. Asthma made it health-topics/topics/asthma/ sports or slow down to use her inhaler worse. during gym class. ɖ NIBIB-Supported Study: Giving birth was also more https://projectreporter.nih. An avid swimmer, Sylvia once complicated. Luckily, Sylvia’s doctors gov/project_info_description. stopped in the middle of the pool lane knew that she had asthma and were cfm?aid=9076859 during a swim meet because she was ready for any possible issues. “During ɖ NHALES Study: having difficulty breathing. Having labor, I was having an asthma attack,” asthma was emotionally difficult. www.niehs.nih.gov/research/ she said. “It was so much exertion clinical/studies/nhales/ “I hated having asthma,” she said. and so much pressure.” She ended up ɖ Allergy and Asthma “People don’t see asthma, but you needing a breathing mask to ensure know you have it.” Foundation of America: she got enough oxygen. www.aafa.org Sylvia’s asthma symptoms have While asthma has impacted worsened, making some physical PHOTO: KEVIN GBOLIE PHOTO:
Fall 2017 medlineplus.gov/magazine 27 from the LATEST RESEARCH UPDATES lab FROM NIH
Predicting Autism in High-Risk Infants AN NIH-SUPPORTED STUDY has found a tool that may be able to predict which high-risk, 6-month-old infants will develop autism spectrum disorder by age 2. Such a tool would be significant because it could lead to earlier treatment of the condition. Researchers looked at how regions of the brain work together during different tasks and during rest. The study used scanning technology called Study researchers looked at how regions of the brain work together. functional magnetic resonance imaging (functional MRI or fMRI). It measures “Although the findings are early- Another study analysis that tested brain activity by looking at changes in stage, the study suggests that in the how well the results could apply to blood flow. future, neuroimaging may be a useful other cases had an accuracy rate of The study is funded by NIH’s Eunice tool to diagnose autism or help health 93 percent. Kennedy Shriver National Institute of care providers evaluate a child’s risk of “Previous findings suggest that brain- Child Health and Human Development developing the disorder,” said Joshua related changes occur in autism before (NICHD) and the National Institute of Gordon, M.D., Ph.D., NIMH director. behavioral symptoms emerge,” said Mental Health (NIMH). One study analysis predicted each Diana Bianchi, M.D., NICHD director. “If Using fMRI technology, the infant’s future diagnosis by using future studies confirm these results, researchers scanned 6-month-old the other infants’ data. This method detecting brain differences may enable infants while they slept. The children identified 82 percent of the infants physicians to diagnose and treat autism in the study were labeled as high-risk who would go on to have autism (9 earlier than they do today.” T because they have older siblings with out of 11). It also correctly identified autism. At age 2 years, 11 of the 59 SOURCE NIH News and Events https:// all of the infants who did not go on to www.nih.gov/news-events/news-releases/ infants in the group were diagnosed develop autism. neuroimaging-technique-may-help-predict-
with autism. autism-among-high-risk-infants ADOBE STOCK IMAGES:
28 Fall 2017 NIH MedlinePlus Rare Gene Mutation May Have Link to Common Cold
COLDS SEEM HARDER investigating this unique to escape as the case, our researchers temperature drops and not only helped this child people spend more time but also helped answer DNA-PK activity lowers the number of mitochondria, shown here, which turn fat into energy to fuel the body. indoors. They are also not some important scientific well understood by doctors questions about these and scientists. Recently widespread infections that though, NIH-supported affect nearly everyone.” research found a new piece Researchers then New Discovery of information about this analyzed a database of common infection. more than 60,000 Researchers at the National volunteers’ genomes. While About Middle-Age Institute of Allergy and the genetic mutation was Infectious Diseases (NIAID) rare, they found multiple identified a rare genetic variations in the IFIH1 gene Weight Gain mutation earlier this year. It that could lead to these A TEAM OF SCIENTISTS has identified an can result in a person being dysfunctional proteins in the enzyme that promotes weight gain and the loss more prone to infection by respiratory tract. of exercise capacity starting in midlife. Enzymes human rhinoviruses (HRVs), Insights from the study may increase the rate of chemical reactions. Through the main cause of the lead to new strategies for animal studies, the team found a drug that inhibits common cold. treating patients with severe the enzyme to prevent weight gain in mice, increase The study looked at the complications from colds. T fitness levels, and reduce the incidence of obesity case of a young child who SOURCE: NIH Research Matters and type 2 diabetes. had respiratory infections, https://www.nih.gov/ news-events/ The particular enzyme is activated by a including colds, influenza, nih-research-matters/genetic- specific kind of DNA damage. But it also may and bacterial pneumonia, alteration-child-reveals-immune- response-pathway-common-cold affect the metabolism, which controls digestion within only a few weeks and waste elimination. of birth. The genetic The researchers thought reducing DNA-PK analysis of the child activity could cause fat burning. They tested their found a mutation theory with a drug that inhibits DNA-PK. Mice that in the IFIH1 gene. took the drug had a 40 percent decrease in weight The gene mutation gain when fed a high-fat diet. created problems The team is led by Jay H. Chung, an with proteins in her endocrinologist at the National Heart, Lung, and respiratory tract. Blood Institute. It also included researchers from “The human the National Institute of Diabetes and Digestive and immune response Kidney Diseases, and five universities. to common cold The findings could lead to the development of a viruses is poorly new type of weight-loss medication. T understood,” said NIAID Director SOURCE NIH Research Matters/The NIH Catalyst https:// Anthony S. www.nih.gov/news-events/nih-research-matters/enzyme- drives-middle-age-weight-fitness-changes Fauci, M.D. “By IMAGES: ADOBE STOCK IMAGES:
Fall 2017 medlineplus.gov/magazine 29 NIH Find it all in one place! on medlineplus.gov/magazine theweb
NIH MedlinePlus is Now Animated! ClinicalTrials.gov INTERESTED IN JOINING A magazine is now on YouTube. NIH MEDLINEPLUS CLINICAL TRIAL but not sure where Check out our bonus animated videos on medical topics to start? ClinicalTrials.gov, a service of featured in the magazine. NIH, allows you to search for studies by The videos feature fun information that supplements condition or disease, location, study phase, our articles. and more. Our first animation is titled “Histamine: Friend or Foe…or The database currently lists 249,566 Frenemy?” Why do our bodies make a chemical that causes studies with locations in all 50 states and in allergies? Find out in this video. 201 countries. Of those, more than 40,000 We plan to feature more videos in the coming months. We’ll studies are recruiting volunteers. look at topics such as celiac disease and antibiotic-resistant The listing of a study on ClinicalTrials.gov infections. The videos break down medical conditions, provide does not reflect endorsement by NIH. So interesting facts, and introduce NIH research. make sure to talk with a trusted health You can find our animations on the NIH MedlinePlus magazine care professional before volunteering for playlist within the NLM YouTube Channel. Search for “histamine” a study. to see the first animation. To see if a study is NIH-supported, make Please leave comments on the videos telling us what topics sure to select “NIH” under the “Funder you’d like to see next. Type” drop-down menu. Source: www.youtube.com/user/NLMNIH
Social Media Corner: Chemotherapy Three New Topics on Did you know that the development of MedlinePlus chemotherapy happened at the NIH Clinical Center? Follow MEDLINEPLUS.GOV, your resource @NIH on Twitter to learn more cool facts and see the latest for trusted health information, hit the 1,000 updates from NIH and its 27 institutes and centers. topic mark this year. Now, it’s added three more topics. Those include tanning, mosquito bites, and the risks of an inactive lifestyle. Check out MedlinePlus’ pages on these conditions and more. Each disease topic page links to information on symptoms, treatment options, diagnostics tests, medical journal articles, and latest news.
30 Fall 2017 NIH MedlinePlus NIH MedlinePlus NIH Is Here to Help Advisory Group Marin P. Allen, Ph.D., NIH Office of The National Institutes of Health (NIH)—the nation’s medical research agency— Communications and Public Liaison includes 27 Institutes and Centers and is a part of the U.S. Department of Health and Shuly Babitz, National Institute on Alcohol Abuse and Alcoholism Human Services. It is the primary federal agency for conducting and supporting basic, Joyce Backus, National Library of clinical, and translational medical research, and it investigates the causes, treatments, Medicine (ex-officio) and cures for both common and rare diseases. For more information about NIH and its Melissa Barrett, National Institute of Nursing Research programs, visit www.nih.gov. Karina Boehm, National Institute of Dental and Craniofacial Research Institutes Eunice Kennedy Shriver National Institute of Kym Collins-Lee, National Eye National Institute of Neurological Disorders and Institute National Library of Child Health and Human Stroke (NINDS) Kathleen Cravedi, National Library of Medicine (NLM) Development (NICHD) www.ninds.nih.gov Medicine (ex-officio) www.nlm.nih.gov www.nichd.nih.gov 800-352-9424 Stephanie Dailey, National Institute 888-FIND-NLM 888-346-3656 800-370-2943 National Institute of on Aging National Cancer National Institute on Deafness Nursing Research (NINR) Meredith Daly, Eunice Kennedy Institute (NCI) and Other Communication www.ninr.nih.gov Shriver National Institute of Child www.cancer.gov Disorders (NIDCD) 301-496-0207 Health and Human Development 800-4-CANCER 800-422-6237 www.nidcd.nih.gov Marian Emr, National Institute of National Eye Institute (NEI) 800-241-1044 (voice) Centers & Offices Neurological Disorders and Stroke www.nei.nih.gov | 301-496-5248 800-241-1055 (TTY) Fogarty International Jody Engel, NIH Office of Disease National Heart, Lung, and National Institute of Dental Prevention and Craniofacial Research Center (FIC) Blood Institute (NHLBI) www.fic.nih.gov Claudia Faigen, NIH Office of (NIDCR) www.nhlbi.nih.gov 301-402-8614 Dietary Supplements 301-592-8573 www.nidcr.nih.gov 301-480-4098 National Center for Christine Bruske Flowers, National Human Genome Complementary and National Institute of Environmental Research Institute (NHGRI) National Institute of Diabetes Health Sciences and Digestive and Kidney Integrative Health (NCCIH) www.genome.gov www.nccih.nih.gov Peter Garrett, National Cancer 301-402-0911 Diseases (NIDDK) Institute www.niddk.nih.gov 888-644-6226 National Institute on Aging NIDDK Health Information National Center for Lenora Johnson, National Heart, (NIA) Center 1-800-860-8747 Advancing Translational Lung, and Blood Institute www.nia.nih.gov Joanne Karimbakas, National National Institute on Drug Sciences (NCATS) Aging information 800-222-2225 www.ncats.nih.gov Institute of Deafness and Other Alzheimer’s information Abuse (NIDA) Communication Disorders www.nida.nih.gov | 301-443-1124 301-435-0888 800-438-4380 Kathy Kranzfelder, National National Institute of NIH Clinical Center (CC) National Institute on Alcohol http://clinicalcenter.nih.gov Institute of Diabetes and Digestive Environmental Health Abuse and Alcoholism 301-496-2563 and Kidney Diseases (NIAAA) Sciences (NIEHS) Irene Liu, National Center www.niaaa.nih.gov www.niehs.nih.gov Office of AIDS Research for Complementary and 301-443-3860 919-541-3345 (OAR) Integrative Health www.oar.nih.gov | 301-496-0357 National Institute of Allergy National Institute of General Alisa Machalek, National Institute of and Infectious Diseases Medical Sciences (NIGMS) Office of Behavioral and General Medical Sciences www.nigms.nih.gov (NIAID) Social Sciences Research Raymond MacDougall, www.niaid.nih.gov 301-496-7301 (OBSSR) National Institute of Biomedical www.obssr.od.nih.gov 301-496-5717 National Institute of Mental Imaging and Bioengineering 301-402-1146 National Institute of Arthritis Health (NIMH) John Ohab, National Human Genome and Musculoskeletal and Skin www.nimh.nih.gov Office of Rare Diseases Research Institute 866-615-6464 Diseases (NIAMS) Research (ORDR) Stephanie Older, J.D., National www.rarediseases.info.nih.gov www.niams.nih.gov National Institute on Minority Institute on Drug Abuse 877-22NIAMS 877-226-4267 Health and Health Disparities Genetic and Rare Disease Trish Reynolds, National Institute National Institute of (NIMHD) Information Center of Arthritis and Musculoskeletal Biomedical Imaging and www.nimhd.nih.gov 888-205-2311 and Skin Diseases 301-402-1366 Bioengineering (NIBIB) Office of Research on Allisen Stewart, National Institute of www.nibib.nih.gov Women’s Health (ORWH) Allergy and Infectious Diseases 301-451-6772 www.orwh.od.nih.gov Natalie Zeigler, National Institute of 301-402-1770 Mental Health
Fall 2017 medlineplus.gov/magazine 31 Health information Chinese is Exploreavailable more than 1,400 in genes and learn about Spanish manythe health languages. effects of genetic changes with the National Library of Medicine’s Genetics Home The NationalReference Institute onwebsite. Minority Health and Health Disparities’ Language Access Portal offers health resources and information in English, Spanish, Chinese, and more.
Visit nimhd.nih.gov/LAP
The National Institute on Minority Health and Health Disparities’ Language Access Portal offers health resources and information in English, Spanish, Chinese, and more.
Visit: www.ghr.nlm.nih.gov