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Special video and in-person presentations awaited guests at the February 10 dinner for the Friends of the National Library of Medicine (FNLM) Board of Directors and the National Library of Medicine (NLM) Board of Regents in the Lister Hill building lobby. Guests attended a preview of a new video chronicling the remarkable life and career of Michael E. DeBakey, M.D., pioneering cardiac surgeon, mentor to students young and old, and tireless champion of the National Library of Medicine. Dr. DeBakey died in 2008 at the age of 99.
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  • 1. Gluten For those with celiac disease, the enemy is ... Get Vaccinated! For your family and your community, follow the guidelines for vaccinations in childhood, adoles- cence, and adulthood. Managing Hearing Loss Research on hearing loss and a growing number of assistive hearing aids are reducing the incidence of deafness. Watch Out for Glaucoma Studies show that at least half of all persons with glaucoma don’t know they have this potentially blinding eye disease. Here’s how to find out. Actress Jennifer Esposito and thousands of other Americans with celiac disease have a lifelong dietary battle. Celiac disease is an autoimmune disorder that damages the small intestine and can make life miserable. NIHMedlinePlust h e m a g a z i n e Trusted Health Information from the National Institutes of Health A publication of the NATIONAL INSTITUTES OF HEALTH and the FRIENDS of the NATIONAL LIBRARY OF MEDICINE S P R I N G 2 0 1 5
  • 2. Special video and in-person presentations awaited guests at the February 10 dinner for the Friends of the National Library of Medicine (FNLM) Board of Directors and the National Library of Medicine (NLM) Board of Regents in the Lister Hill building lobby. Guests attended a preview of a new video chronicling the remarkable life and career of Michael E. DeBakey, M.D., pioneering cardiac surgeon, mentor to students young and old, and tireless champion of the National Library of Medicine. Dr. DeBakey died in 2008 at the age of 99. Videotaped remarks by L. Thompson Bowles, M.D., a thoracic surgeon who studied under Dr. DeBakey, were also presented. Dr. Bowles was a member of the National Library of Medicine’s Board of Regents from 1982-1986, and served as its chair from 1984-1986. Dr. Bowles also served as a consultant to NLM’s Profiles in Science project, working closely with archivists and historians on the organization of the papers of Dr. DeBakey, including the selection of documents, photographs, and audiovisual materials for digitization. An in-person presenta- tion about Dr. DeBakey was also given by Dr. Ronald Cotton, a graduate of the DeBakey High School for Health Professions that was founded by Dr. Michael DeBakey to provide a challenging, well-balanced college preparatory pro- gram for students pursuing careers in medicine, health care, and or the sciences. Dr. Cotton discussed his receipt of his medical degree from Baylor College of Medicine (BCM) following his attendance at the DeBakey High School. He is now a surgeon at BCM and his wife, also a graduate of the DeBakey High School, is a practicing dentist in Houston. FRIENDS OF THE NATIONAL LIBRARY OF MEDICINE The public will soon be able to view the new video on Dr. Michael E. DeBakey, streamed from the website: www.nlm.nih.gov/news/newsevents.html Presentations on Legendary Cardiac Surgeon Dr. Michael E. DeBakey Highlight FNLM/NLM Board Dinner ▲ Dr. DeBakey with NLM’s David Nash and admiring students at the Michael E. DeBakey High School for Health Professions in Houston, Texas. ▲ L. Thompson Bowles, M.D., a thoracic surgeon who studied under Dr. DeBakey, discussed via video the impact of Dr. DeBakey’s many achievements. ▲ Ronald Cotton, M.D., is a graduate of the DeBakey High School for Health Professions that was founded by Dr. Michael DeBakey. At the FNLM/ NLM dinner, Dr. Cotton spoke about Dr. DeBakey’s lasting influence. ▲ Dr. DeBakey (in NLM’S Profiles in Science video) Photos this page: National Library of Medicine.
  • 3. MedlinePlust h e m a g a z i n e contents Volume 10 Number 1 Spring 2015 The National Institutes of Health (NIH)—the Nation’s Medical Research Agency—includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical, and translational medical research, and it investigates the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov. Follow us on @medlineplus INSIDE FRONT COVER Help Out for Health: Be a Friend If you or your company can help support and expand the publication and distribution of NIH MedlinePlus magazine, thousands more people will gain valuable, free access to the world’s best online medical library, www.medlineplus.gov. For more information, please visit www.fnlm.org or call (202) 679-9930. Or, write to FNLM, 4720 Montgomery Lane, Suite 500, Bethesda, MD 20814. Trusted medical information on your mobile phone. http://m.medlineplus.gov and in Spanish at http://m.medlineplus.gov/spanish Mobile MedlinePlus! NATIONAL LIBRARY OF MEDICINE at the NATIONAL INSTITUTES OF HEALTH 8600 Rockville Pike • Bethesda, MD 20894 www.nlm.nih.gov www.medlineplus.gov Donald A.B. Lindberg, MD Director, NLM Betsy L. Humphreys, MLS, Deputy Director, NLM Kathleen Cravedi Director, Office of Communications and Public Liaison, NLM Patricia Carson Special Assistant to the Director, NLM Fedora Braverman MedlinePlus and MedlinePlus en español teams, NLM Jamie Peacock Outreach Librarian, NLM Melanie Modlin Deputy Director, Office of Communications and Public Liaison, NLM Elliot Siegel, PhD Outreach Consultant, NLM Christopher Klose Contributing Editor Peter Reinecke Strategic Advisor Friends of the NLM (202) 679-9930 4720 Montgomery Lane, Suite 500 Bethesda, MD 20814 Donations and Sponsorships If you are interested in providing a sponsorship or other charitable donation to support and extend the reach of this publication, please contact the FNLM office at (202) 679-9930. FNLM Officers Glen P. Campbell, Chairman Barbara Redman, PhD, FAAN, RN, President H. Kenneth Walker, MD, Executive Committee Chairman Naomi C. Broering, MLS, MA, Secretary Dennis Cryer, MD, Treasurer Selby Bateman, Managing Editor Linda F. Lowe, Senior Designer/Web Developer Jan McLean, Creative Director Traci Marsh, Production Director NIH MedlinePlus magazine is published by StayWell 407 Norwalk St. Greensboro, NC 27407 (336) 547-8970 William G. Moore, President Sharon B. Tesh, Senior Staff Accountant Articles in this publication are written by professional journalists. All scientific and medical information is reviewed for accuracy by representatives of the National Institutes of Health. However, personal decisions regarding health, finance, exercise, and other matters should be made only after consultation with the reader’s physician or professional advisor. Opinions expressed herein are not necessarily those of the National Library of Medicine. 24 Managing Seasonal Allergies 28 Health Lines: Research News You Can Use 29 Info to Know 2 Celiac Disease: The Enemy Is Gluten 8 Managing Hearing Loss 14 Watch Out for Glaucoma 17 Vaccines—What You Need to Know ▲ Today’s vaccines have made childhood sicknesses much less frequent and life threatening than they used to be. ▲ Glaucoma, which can damage the eyes’ optic nerve, is a silent disease. But, caught early, it can be managed. A special tribute and new video on Dr. Michael DeBakey debuted at the NLM/FNLM Dinner. 4 14 ▲ Actress and new gluten-free bakery owner, Jennifer Esposito, won’t let celiac disease slow her down. 17 Photos: (Cover and Top) Jennifer Esposito, (Middle) ThinkStock, (Bottom) National Eye Institute
  • 4. 2 Spring 2015 NIH MedlinePlus Celiac disease, she learned, affects each person differently. Symptoms may occur in the digestive system, or in other parts of the body. One person might have diarrhea and abdominal pain, while another person may be irritable or depressed. Today, Esposito has totally changed her diet. And while still an actress, she has also made time to start a gluten-free bakery called Jennifer’s Way and written a book by the same name that details her journey with the disease and shares resources for others with the condition. NIH MedlinePlus magazine recently asked Jennifer Esposito about her celiac disease experiences: How long did it take you to get your condition diagnosed? Even though my very first symptoms started at birth, with severe rashes all over my body, it wasn’t until I was 15 that my journey to be diagnosed began. Although I never knew what I was looking for during the next 20 years, I did know the way I was feeling. As time went on, and I became more and more unwell, I knew there was something going on. What were your thoughts when you were told you had celiac disease? I was actually thrilled when I was finally diagnosed. To know that what my body was telling me and what I knew in my gut for years, that something was very wrong and it wasn’t all in my head, was an absolute gift, even if that meant having a disease. The not knowing and the implications of being a hypochondri- ac, dramatic, crazy, hormonal, or whatever else I was told, was almost harder than the disease itself. FEATURE: CELIAC DISEASE Celiac Disease For actress Jennifer Esposito, going from one doctor to the next, seeking relief, and even getting a correct diagnosis of her condition, proved to be a nightmare. As her symptoms worsened, Esposito continued her busy life, while also looking for answers. She was a hard-working, award-winning actress for almost 15 years. She managed to own her own home by the age of 25. But almost everything she ate was toxic to her system. Then, finally, a doctor mentioned a term she had not heard before: celiac disease. Changes EverythingCeliac disease is an immune disease in which people can’t eat the protein gluten because it will damage their small intestine. ▲ Jennifer Esposito and husband Louis Dowler now run a New York City gluten-free bakery, Jennifer’s Way, sparked by Esposito’s struggles with celiac disease. Photo:JenniferEsposito
  • 5. Spring 2015 3 FastFacts ✔✔ Celiac disease is an immune disorder in which people can’t eat gluten or use items with gluten in them. ✔✔ Celiac disease harms the small intestine. ✔✔ People with untreated celiac disease can’t get needed nutrients. ✔✔ Without treatment, people with celiac disease can develop other health problems. ✔✔ Celiac disease is diagnosed by blood tests and a biopsy of the small intestine. ✔✔ The only treatment for celiac disease is to avoid gluten. ✔✔ A dietitian can help people choose the right foods. What is celiac disease? Celiac disease is an immune disorder in which people can’t eat gluten because it will damage their small intestine. Gluten is a protein found in wheat, rye, and barley. Gluten may also be used in products such as vitamin and nutrient supplements, lip balms, and some medicines. Your body’s natural defense system—called the immune system—keeps you healthy by fighting against things that can make you sick, such as bacteria and viruses. When people with celiac disease eat gluten, their body’s immune system reacts to the gluten by attacking the lining of the small intestine. The immune system’s reaction to gluten damages small, fingerlike growths called villi. When the villi are damaged, the body cannot get the nutrients it needs. Celiac disease is hereditary, meaning it runs in families. Adults and children can have celiac disease. As many as 2 million Americans may have celiac disease, but most don’t know it. Celiac disease can be very serious. It often causes long-lasting digestive problems and keeps your body from getting all the nutrition it needs. Over time, celiac disease can cause anemia, infertility, weak and brittle bones, an itchy skin rash, and other health problems. How common is celiac disease? Celiac disease affects people in all parts of the world. Orig- inally thought to be a rare childhood syndrome, celiac disease is now known to be a common genetic disorder. More than 2 million people in the United States have the disease, or about 1 in 133 people. Among people who have a first-degree rela- tive—a parent, sibling, or child—diagnosed with celiac disease, as many as 1 in 22 people may have the disease. Celiac disease is also more common among people with other genetic disorders including Down syndrome and Turner syndrome, a condition that affects girls’ development. What other health problems do people with celiac disease have? People with celiac disease tend to have other diseases in which the immune system attacks the body’s healthy cells and tissues. The connection between celiac disease and these diseases may be genetic. They include: ■■ type 1 diabetes ■■ autoimmune thyroid disease ■■ autoimmune liver disease ■■ rheumatoid arthritis ■■ Addison’s disease, a condi- tion in which the glands that produce critical hormones are damaged ■■ Sjögren’s syndrome, a condi- tion in which the glands that produce tears and saliva are destroyed How difficult has it been to eliminate your intake of gluten? Once you understand how much damage gluten is doing to you, there really isn’t much of a choice. I don’t choose to feel like I’m dying just to eat a piece of bread. You must realize that this isn’t a change of diet, this is a change of life! Have you found inspiration from others who have celiac disease? The celiac community was the only place I found answers, understanding, and true compassion that only others with celiac could give, because they have experienced what I was going through. I suggest for anyone dealing with this disease—or any disease for that matter—to find others who are going through the same thing. The support from others who have been there is what will pull you through the hard times. What advice do you have for others who have been diagnosed with celiac disease? My suggestion for any new celiac patient is to get my book. This is not a sales pitch—you can check the book out of your local library or borrow it from a friend. But this is the book I wish I’d had when I was diagnosed. It tells you everything you need to know: what to expect, what other factors of your diet to look at, lifestyle changes, emotional aspects of the disease, and it even gives some recipes. But, mostly what it does is make you realize, through my jour- ney, that you are not only on the crazy ride that this autoimmune disease takes you on; it is also a gift, at such a hard time. The letters I receive from people all around the world who have been helped by my book have been overwhelming and heartwarming, to say the very least. It made me realize this disease wasn’t a bad thing in my life, but a true gift.
  • 6. 4 Winter 2015 NIH MedlinePlus FEATURE: CELIAC DISEASE Why are celiac disease symptoms so varied? Researchers are studying the reasons celiac disease affects people differently. The length of time a person was breastfed, the age a person started eating gluten-containing foods, and the amount of gluten-containing foods one eats are three factors thought to play a role in when and how celiac disease appears. Some studies have shown, for example, that the longer a person was breastfed, the later the symptoms of celiac disease appear. Symptoms also vary depending on a person’s age and the degree of damage to the small intestine. Many adults have the disease for a decade or more before they are diagnosed. The longer a person goes undiagnosed and untreated, the greater the chance of developing long-term complications. How is celiac disease diagnosed? “Celiac disease can be hard to diagnose because some of its symptoms are like the symptoms of other diseases,” says Dr. Griffin Rodgers, director of the National Institute of Diabetes and Diges- tive and Kidney Diseases (NIDDK). “If your doctor thinks you might have celiac disease, you may need a blood test and biopsy. “Before the blood test, it is important to be on your regular diet,” he says. “If not, the results could be wrong. A biopsy involves taking a tiny piece of tissue from your small intestine. The tissue will be viewed with a microscope to look for signs of celiac damage.” Blood Tests People with celiac disease have higher-than-normal levels of certain autoantibodies—proteins that react against the body’s own cells or tissues—in their blood. To diagnose celiac disease, doctors will test blood for high levels of anti-tissue transglutaminase anti- bodies (tTGA) or anti-endomysium antibodies (EMA). If test results are negative but celiac disease is still suspected, additional blood tests may be needed. Before being tested, one should continue to eat a diet that includes foods with gluten, such as breads and pastas. If a person stops eating foods with gluten before being tested, the results may be negative for celiac disease, even if the disease is present. Intestinal Biopsy If blood tests and symptoms suggest celiac disease, a biopsy of the small intestine is performed to confirm the diagnosis. During the biopsy, the doctor removes tiny pieces of tissue from the small intestine to check for damage to the villi. To obtain the tissue sample, the doctor eases a long, thin tube called an endoscope through the patient’s mouth and stomach into the small intestine. The doctor then takes the samples using instruments passed through the endoscope. Dermatitis Herpetiformis Dermatitis herpetiformis (DH) is an intensely itchy, blistering skin rash that affects 15 to 25 percent of people with celiac disease. The rash usually occurs on the elbows, knees, and buttocks. Most people with DH have no digestive symptoms of celiac disease. DH is diagnosed through blood tests and a skin biopsy. If the antibody tests are positive and the skin biopsy has the typical findings of DH, patients do not need to have an intestinal biopsy. Both the skin disease and the intestinal disease respond to a gluten-free diet and recur if gluten is added back into the diet. The rash symptoms can be controlled with antibiotics such as dapsone. Because dapsone does not treat the intestinal condition, people with DH must maintain a gluten-free diet. Screening Screening for celiac disease means testing for the presence of autoantibodies in the blood in people without symptoms. Americans are not routinely screened for celiac disease. However, because celiac disease is hereditary, family members of a person with the disease may wish to be tested. Four to 12 percent of an affected person’s first-degree relatives will also have the disease. What are some of the symptoms of celiac disease? ■■ stomach pain ■■ gas ■■ diarrhea ■■ extreme tiredness ■■ change in mood ■■ weight loss ■■ a very itchy skin rash with blisters ■■ slowed growth Some people with celiac disease may not feel sick or have symptoms. Or, if they feel sick, they don’t know celiac disease is the cause. Most people with celiac disease have one or more symptoms. Not all people with celiac disease have digestive prob- lems. Having one or more of these symptoms does not always mean a person has celiac disease because other disorders can cause these symptoms.
  • 7. Spring 2015 5 Hope through Research The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) conducts and supports research on celiac disease. Researchers are studying new options for diagnosing celiac disease, including capsule endoscopy, which involves patients swallowing a capsule containing a tiny video camera that records images of the small intestine. Several drug treatments for celiac disease are being studied. Researchers are also studying a combination of enzymes— proteins that aid chemical reactions in the body—that might change gluten in ways that prevent it from causing an immune reaction before it enters the small intestine. Scientists are also developing educational materials for standardized medical training to raise awareness among healthcare providers. The hope is that increased understanding and awareness will lead to earlier diagnosis and treatment of celiac disease. Participants in clinical trials can play a more active role in their own health care, gain access to new research treatments before they are widely available, and help others by contribut- ing to medical research. For information about current studies, visit www.ClinicalTrials.gov. Her favorite foods are fresh fruit a
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