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  Related Information **Could I Have 
Lupus?**National Lupus Awareness CampaignHHS Office on 
Women's Health   Handout 
  on Health: Systemic Lupus ErythematosusA 
  Patient Guide for Nurses and Other Health ProfessionalsWhat is 
  Lupus? (fast facts, easy-to-read)�Qu� 
  es el lupus? (Esenciales: Hojas informativas de f�cil lectura)Do I 
  Have Lupus?Order a NIAMS Publication to be 
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  Articles
 Lupus Publication Date: April 2009 The Many Shades of Lupus: Information for Multicultural Communities If you have lupus, you probably have many questions. Lupus isn�t a simple 
disease with an easy answer. You can�t take a pill and make it go away. The 
people you live with and work with may have trouble understanding that you�re 
sick. Lupus doesn�t have a clear set of signs that people can see. You may know 
that something�s wrong, even though it may take a while to be diagnosed. Teacher and students talking about lupusLupus has many shades. It can affect people of different races, 
ethnicities, and ages, both men and women. It can look like different diseases. 
It�s different for every person who has it. The good news is that you can get help and fight lupus. Learning about it is 
the first step. Ask questions. Talk to your doctor, family, and friends. People 
who look for answers are more likely to find them. This booklet can help you get 
started. What Is Lupus? Lupus is an autoimmune (AW-toe-ih-MYOON) disease. Your body�s immune system 
is like an army with hundreds of soldiers. The immune system�s job is to fight 
foreign substances in the body, like germs and viruses. But in autoimmune 
diseases, the immune system is out of control. It attacks healthy tissues, not 
germs. You can�t catch lupus from another person. It isn�t cancer, and it isn�t 
related to AIDS. Lupus is a disease that can affect many parts of the body. Everyone reacts 
differently. One person with lupus may have swollen knees and fever. Another 
person may be tired all the time or have kidney trouble. Someone else may have 
rashes. Lupus can involve the joints, the skin, the kidneys, the lungs, the 
heart and/or the brain. If you have lupus, it may affect two or three parts of 
your body. Usually, one person doesn�t have all the possible symptoms. There are three main types of lupus: **Systemic lupus erythematosus** (eh-RITH-eh-muh-TOE-sus) is 
  the most common form. It�s sometimes called SLE, or just lupus. The word 
  �systemic� means that the disease can involve many parts of the body such as 
  the heart, lungs, kidneys, and brain. SLE symptoms can be mild or serious.**Discoid lupus erythematosus** mainly affects the skin. A 
  red rash may appear, or the skin on the face, scalp, or elsewhere may change 
  color.**Drug-induced lupus** is triggered by a few medicines. It�s 
  like SLE, but symptoms are usually milder. Most of the time, the disease goes 
  away when the medicine is stopped. More men develop drug-induced lupus because 
  the drugs that cause it, hydralazine and procainamide, are used to treat heart 
  conditions that are more common in men. What 
  Are the Signs and Symptoms of Lupus?What 
  Is a Flare?What 
  Causes Lupus?Who 
  Gets Lupus?What 
  Will the Doctor Do?Will I 
  Get Medicine?How 
  Can I Cope With Lupus?Hope 
  Through ResearchWhere 
  Can People Find More Information About Lupus?Acknowledgments Information Boxes Preventing 
  a FlareDiagnosis: 
  How Do You Find Out If You Have Lupus?Symptom 
  Checklist What Are the Signs and Symptoms of Lupus? Lupus may be hard to diagnose. It�s often mistaken for other diseases. For 
this reason, lupus has been called the �great imitator.� The signs of lupus 
differ from person to person. Some people have just a few signs; others have 
more. Common signs of lupus are: Red rash or color change on the face, often in the shape of a butterfly 
  across the nose and cheeksFace of teacherPainful or swollen jointsUnexplained feverChest pain with deep breathingSwollen glandsExtreme fatigue (feeling tired all the time)Unusual hair loss (mainly on the scalp)Pale or purple fingers or toes from cold or stressSensitivity to the sunLow blood countDepression, trouble thinking, and/or memory problems. Other signs are mouth sores, unexplained seizures (convulsions), �seeing 
things� (hallucinations), repeated miscarriages, and unexplained kidney 
problems. What Is a Flare? When symptoms appear, it�s called a �flare.� These signs may come and go. You 
may have swelling and rashes one week and no symptoms at all the next. You may 
find that your symptoms flare after you�ve been out in the sun or after a hard 
day at work. Even if you take medicine for lupus, you may find that there are times when 
the symptoms become worse. Learning to recognize that a flare is coming can help 
you take steps to cope with it. Many people feel very tired or have pain, a 
rash, a fever, stomach discomfort, headache, or dizziness just before a flare. 
Steps to prevent flares, such as limiting the time you spend in the sun and 
getting enough rest and quiet, can also be helpful.  Preventing a Flare Learn to recognize that a flare is coming.Talk with your doctor.Try to set realistic goals and priorities.Limit the time you spend in the sun.Maintain a healthy diet.Develop coping skills to help limit stress.Get enough rest and quiet.Moderately exercise when possible.Develop a support system by surrounding yourself with people you trust and 
  feel comfortable with (family, friends, etc.).
  What Causes Lupus? We don�t know what causes lupus. There is no cure, but in most cases lupus 
can be managed. Lupus sometimes seems to run in families, which suggests the 
disease may be hereditary. Having the genes isn�t the whole story, though. The 
environment, sunlight, stress, and certain medicines may trigger symptoms in 
some people. Other people who have similar genetic backgrounds may not get signs 
or symptoms of the disease. Researchers are trying to find out why. Who Gets Lupus? Anyone can get lupus. But 9 out of 10 people who have it are women. African 
American women are three times more likely to get lupus than white women. It�s 
also more common in Hispanic/Latino, Asian, and American Indian women. Students, Aide, and GlobeBoth African Americans and Hispanics/Latinos tend to develop lupus at 
a younger age and have more symptoms at diagnosis (including kidney 
problems). They also tend to have more severe disease than whites. For example, African 
American patients have more seizures and strokes, while Hispanic/Latino patients 
have more heart problems. We don�t understand why some people seem to have more 
problems with lupus than others. Lupus is most common in women between the ages of 15 and 44. These are 
roughly the years when most women are able to have babies. Scientists think a 
woman�s hormones may have something to do with getting lupus. But it�s important 
to remember that men and older people can get it, too. It�s less common for children under age 15 to have lupus. One exception is 
babies born to women with lupus. These children may have heart, liver, or skin 
problems caused by lupus. With good care, most women with lupus can have a 
normal pregnancy and a healthy baby.  Diagnosis: How Do You Find Out If You Have Lupus? Medical history � Telling a doctor about your symptoms and other problems 
  you have had can help him or her understand your situation. Your history can 
  provide clues to your disease. Use the checklist at the end of this booklet to 
  keep track of your symptoms. Share this checklist with your doctor. Ask your 
  family or friends to help you with the checklist or come up with questions for 
  your doctor.Complete physical exam � The doctor will look for rashes and other signs 
  that something is wrong.Laboratory testing of blood and urine samples � Blood and urine samples 
  often show if your immune system is overactive.Skin or kidney biopsy � In a biopsy, tissue that is removed by a minor 
  surgical procedure is examined under a microscope. Skin or kidney tissue 
  examined in this way can show signs of an autoimmune disease.
  What Will the Doctor Do? Go see a doctor. He or she will talk to you and take a history of your health 
problems. Many people have lupus for a long time before they find out they have 
it. It�s important that you tell the doctor or nurse about your symptoms. This 
information, along with a physical examination and the results of laboratory 
tests, helps the doctor decide whether you have lupus or something else. A rheumatologist (ROOM-uh-TALL-uh-jist) is a doctor who specializes in 
treating diseases that affect the joints and muscles, like lupus. You may want 
to ask your regular doctor for a referral to a rheumatologist. In some cases, a 
dermatologist, a doctor who specializes in treating diseases that affect the 
skin, may be involved in diagnosis and treatment. **No single test can 
show that you have lupus. Your doctor may have to run several tests and study 
your medical history. It may take time for the doctor to diagnose 
lupus.** Will I Get Medicine? Remember that each person has different symptoms. Treatment depends on the 
symptoms. The doctor may give you aspirin or a similar medicine to treat swollen 
joints and fever. Creams may be prescribed for a rash. For more serious 
problems, stronger medicines such as antimalaria drugs, corticosteroids, and 
chemotherapy drugs are used. Your doctor will choose a treatment based on your 
symptoms and needs. **Always tell your doctor if you have problems with your medicines. Let 
your doctor know if you take herbal or vitamin supplements.** Your 
medicines may not mix well with these supplements. You and your doctor can work 
together to find the best way to treat all of your symptoms. How Can I Cope With Lupus? You need to find out what works best for you. You may find that a 
rheumatologist has the best treatment plan for you. Other health professionals 
who can help you deal with different aspects of lupus include psychologists, 
occupational therapists, dermatologists, and dietitians. You might find that 
doing exercises with a physical therapist makes you feel better. The important 
thing is to follow up with your health care team on a regular basis, even when 
your lupus is quiet and all seems well. Woman waking up from sleepDealing with a long-lasting disease like lupus can be hard on the 
emotions. You might think that your friends, family, and coworkers do not 
understand how you feel. Sadness and anger are common reactions. People with lupus have limited energy and must manage it wisely. Ask your 
health care team about ways to cope with fatigue. Most people feel better if 
they manage their rest and work and take their medicine. If you�re depressed, 
medicine and counseling can help. Also, Pay attention to your body.Slow down or stop before you�re too tired. Learn to pace yourself. Spread 
  out your work and other activities.Don�t blame yourself for your fatigue. It�s part of the disease.Consider support groups and counseling. They can help you realize that 
  you�re not alone. Group members teach one another how to cope.Consider other support from your family as well as faith-based and other 
  community groups. It�s true that staying healthy is harder when you have lupus. You need to pay 
close attention to your body, mind, and spirit. Having a chronic disease is 
stressful. People cope with stress differently. Some approaches that may help 
are: Staying involved in social activitiesPracticing techniques such as meditation and yogaSetting priorities for spending time and energy. Man exercising by walking his dogExercising is another approach that can help you cope with lupus. 
Types of exercise that you can practice include the following: **Range-of-motion** (for example, stretching) exercise helps 
  maintain normal joint movement and relieve stiffness. This type of exercise 
  helps maintain or increase flexibility.**Strengthening** (for example, weight-lifting) exercises 
  help keep or increase muscle strength. Strong muscles help support and protect 
  joints affected by lupus.**Aerobic or endurance** (for example, brisk walking or 
  jogging) exercises improve cardiovascular fitness, help control weight, and 
  improve overall function. People with chronic diseases like lupus should check with their health care 
professional before starting an exercise program. Learning about lupus may also help. People who are well-informed and take 
part in planning their own care, report less pain. They also may make fewer 
visits to the doctor, have more self-confidence, and remain more active. Women who want to start a family should work closely with their health care 
team; for example, doctors, physical therapists, and nurses. Your obstetrician 
and your lupus doctor should work together to find the best treatment plan for 
you. Hope Through Research Scientists are working to find out what causes lupus and how it can best be 
treated. Here are some of the questions they are trying to answer: Who gets lupus and why?Why are women more likely to get lupus than men?Why are there more cases of lupus among certain racial and ethnic groups?What goes wrong in the immune system and why?What genes play a role in lupus?How can we fix an immune system that isn�t working well?How can lupus symptoms best be treated? The National Institutes of Health (NIH) supports research on health and 
disease. The National Institute of Arthritis and Musculoskeletal and Skin 
Diseases (NIAMS) supports research on the bones, connective tissue, joints, 
muscles, and skin. These are the parts of the body that can be affected by 
lupus. Research supported by NIAMS is looking at these issues: Scientists have demonstrated that people with lupus who test positive for 
  certain antibodies are more likely to have severe flares and that taking 
  prednisone can prevent flares in many individuals.Proteins have been identified in the urine of lupus patients that can 
  indicate the type and severity of kidney disease they have. A simple blood 
  test based on this finding could help patients avoid painful and costly kidney 
  biopsies.Certain genes make some people more likely to have serious complications, 
  such as kidney disease. NIAMS researchers have found a gene linked to a higher 
  risk of lupus kidney disease in African Americans. Changes in this gene keep 
  the immune system from removing harmful germ-fighters from the body after 
  they�ve done their job. Other genes may also play a role.Lupus is more common in women than in men. Researchers are looking into 
  the role of hormones and other male-female differences.One NIAMS project is testing a new drug that scientists hope will have 
  milder side effects than standard treatments. Another study is testing a 
  combination of two medicines. One is a standard drug and the other is a new 
  drug. Scientists hope that the combination will be more effective and cause 
  fewer side effects. Where Can People Find More Information About Lupus? NIH Information Sources National Institute of Arthritis and Musculoskeletal and Skin Diseases 
  (NIAMS)Information ClearinghouseNational Institutes of Health
  1 AMS CircleBethesda,  MD 20892-3675Phone: 
  301-495-4484Toll Free: 877-22-NIAMS (226-4267)TTY: 
  301�565�2966Fax: 301-718-6366Email: [email protected]Website: http://www.niams.nih.gov/
  NIAMS, a part of the NIH, leads the Federal Government research effort in 
  arthritis and other diseases that affect the muscles, bones, joints, and skin. 
  NIAMS supports research and research training throughout the United States, as 
  well as on the NIH campus in Bethesda, Maryland. The NIAMS Office of 
  Communications and Public Liaison provides health and research information for 
  the public through the NIAMS Information Clearinghouse.Clinical Trials at NIH
  Toll Free: 800-411-1222Website: http://clinicaltrials.gov/
  Clinical trials are medical research studies to see whether new treatments 
  are safe and effective. These studies help doctors learn how people respond to 
  medicines or other new or improved treatments. This Web site provides 
  patients, families, and the public with an easy way to get information about 
  clinical trials. Links to the people who are recruiting participants for each 
  study are also provided.MedlinePlus
  Website: http://medlineplus.gov/
  The National Library of Medicine�s Web site for consumer health 
  information Department of Health and Human Services (HHS) Online Resource The following Web site can help you find additional sources of information 
about lupus: HealthFinder
  Website: http://www.healthfinder.gov/
  The HHS site for consumer health information Other Organizations American Academy of Dermatology (AAD)
  P.O. Box 4014Schaumberg,  IL 60618-4014Phone: 
  847-330-0230 Toll Free: 866-503-SKIN (7546)Fax: 
  847-240-1859Website: http://www.aad.org
  The academy is the national organization for dermatology. It is dedicated 
  to achieving the highest quality of dermatologic care for everyone. It can 
  also provide referrals to dermatologists.American Academy of Orthopaedic Surgeons (AAOS)
  6300 North River RoadRosemont,  IL 60018-4262Phone: 
  847-823-7186Toll Free: 800-824-BONE (2663) Fax: 847-823-8125Email: 
  [email protected]Website: 
  http://www.aaos.org
  The academy provides education and practice management services for 
  orthopaedic surgeons and allied health professionals, including those who 
  treat children. It also serves as an advocate for improved patient care and 
  informs the public about the science of orthopaedics. The orthopaedist�s scope 
  of practice includes disorders of the body�s bones, joints, ligaments, 
  muscles, and tendons. For a single copy of an AAOS brochure, send a 
  self-addressed stamped envelope to the address above or visit its Web 
site.American College of Rheumatology (ACR)
  1800 Century Place, Suite 250Atlanta, 
   GA 30345-4300Phone: 404-633-3777Fax: 
  404-633-1870Website: http://www.rheumatology.org
  The American College of Rheumatology (ACR) is an organization of doctors 
  and associated health professionals who specialize in arthritis and related 
  diseases of the bones, joints, and muscles. The Association of Rheumatology 
  Health Professionals, a division of ACR, aims to enhance the knowledge and 
  skills of rheumatology health professionals and to promote their involvement 
  in rheumatology research, education, and quality patient care. The association 
  also works to advance and promote basic and continuing education in 
  rheumatology for health professionals who provide care to people with 
  rheumatic diseases.American Autoimmune-Related Diseases Association, Inc. (AARDA)
  22100 Gratiot Ave.East Detroit,  MI 48021Phone: 
  586-776-3900Toll Free: 800-598-4668Fax: 586-776-3903Email: [email protected]Website: 
  http://www.aarda.org
  The American Autoimmune-Related Diseases Association (AARDA) is a nonprofit 
  voluntary health agency dedicated to bringing a national focus and 
  collaborative effort to the more than 100 known autoimmune diseases through 
  education, awareness, research, and patient services. By collaborating with 
  the National Coalition of Autoimmune Patient Groups (NCAPG), AARDA supports 
  legislative advocacy for autoimmune disease patients. AARDA provides free 
  patient education information, physician and agency referrals, forums and 
  symposia, and a quarterly newsletter.Arthritis Foundation
  P.O. Box 7669Atlanta,  GA 30357-0669Phone: 404-872-7100 
  Toll Free: 800-283-7800Website: http://www.arthritis.org
  The Arthritis Foundation is devoted to supporting arthritis research and 
  providing educational and other services to individuals with arthritis. The 
  foundation publishes a free pamphlet on rheumatoid arthritis and a magazine 
  for members on all types of arthritis. It also provides up-to-date information 
  on research and treatment, nutrition, alternative therapies, and 
  self-management strategies. Chapters nationwide offer exercise programs, 
  classes, support groups, physician referral services, and free literature. The 
  foundation also has free information about lupus, scleroderma, and other 
  autoimmune and rheumatic conditions on its Web site.Lupus Foundation of America (LFA)
  2000 L Street, N.W., Suite 710 Washington, 
   DC 20036Phone: 202-349-1155 Toll Free: 800-558-0121 
  Fax: 202-349-1156Website: http://www.lupus.org
  The Lupus Foundation of America is a national nonprofit voluntary health 
  organization dedicated to finding the causes of and cure for lupus; and to 
  providing support, services and hope to all people with this condition. The 
  LFA and its network of nearly 300 chapters and support groups conduct programs 
  of research, education, and advocacy.SLE Lupus Foundation
  330 Seventh Avenue, Suite 1701New York,  NY 10001Phone: 
  212�685�4118Toll Free: 800-74-LUPUS (745-8787)Fax: 
  212-545-1843Email: [email protected]Website: 
  http://www.lupusny.org
  The SLE Foundation supports and encourages medical research to find the 
  cause and cure of lupus, and improve its diagnosis and treatment. It also 
  provides a wide variety of services to help people with lupus and their 
  families. In addition, this voluntary organization conducts a broad-based 
  public education program to raise awareness of lupus, and increase 
  understanding of this serious chronic autoimmune disease. Symptom Checklist Print out this page and use it to make notes to take to your doctor. Put a 
check mark beside the symptoms you have. Note when you experienced them. Symptom
    checked
    Where?
    When did you first notice?
    Howoften?
    Recentdates?Example:Rashchecked
    face and chest
    2 years ago
    Once or twice a month
    9/17, 10/8, 10/23, 11/15Red rash or 
      color changePainful or 
      swollen jointsUnexplained 
      feverChest pain 
      with deep breathingUnusual hair 
      lossPale or purple 
      fingers or toesSensitivity to 
      sunOther  Do You Have Lupus or a Related Condition? You may be able to help scientists learn more about these 
conditions. For information about research projects near your home, call NIAMS301�495�4484 You could make a difference!
  In Appreciation NIAMS thanks the following people and organizations for their contribution to 
this project: Arthritis Foundation Metropolitan Washington Chapter, Lupus Foundation of 
Greater Washington, Lupus Foundation of America, Barbara Mittleman, M.D., 
Clifton A. Poodry, Ph.D., Laura Robbins, D.S.W., Cheryl Contreras, M.P.I.A., 
Patricia Fraser, M.D., M.P.H., M.S., Lori Harrison Port, M.P.H., and Bobbie 
Drake-Saucer. Special thanks go to our focus group participants and patients with lupus who 
reviewed this publication and provided valuable input. The mission of the National Institute of Arthritis and Musculoskeletal and 
Skin Diseases (NIAMS), a part of the National Institutes of Health (NIH), is to 
support research into the causes, treatment, and prevention of arthritis and 
musculoskeletal and skin diseases; the training of basic and clinical scientists 
to carry out this research; and the dissemination of information on research 
progress in these diseases. The National Institute of Arthritis and 
Musculoskeletal and Skin Diseases Information Clearinghouse is a public service 
sponsored by NIAMS that provides health information and information sources. 
Additional information can be found on the NIAMS Web site at http://www.niams.nih.gov/. This booklet is provided by the National Institute of Arthritis and 
Musculoskeletal and Skin Diseases in cooperation with the Arthritis Foundation 
Metropolitan Washington Chapter. This booklet is not copyrighted. You can make copies of it and give out as 
many as you want. For more copies, contact National Institute of Arthritis and Musculoskeletal and Skin Diseases 
  (NIAMS)Information ClearinghouseNational Institutes of Health
  1 AMS CircleBethesda,  MD 20892-3675Phone: 
  301-495-4484Toll Free: 877-22-NIAMS (226-4267)TTY: 
  301�565�2966Fax: 301-718-6366Email: [email protected]Website: http://www.niams.nih.gov/ NIH Publication No. 09-4958 Visit 
our online order form.
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