skip to Main Content
About Us          Contact Us          |          
A lupus awareness and educational program from the American College of Rheumatology

Understand and manage lupus by accessing information to learn about the disease, advocate for your health and build a self-management plan.

Overview

The Lupus Initiative® (TLI), a national program of the American College of Rheumatology (ACR), is dedicated to improving the diagnosis, treatment, and management of lupus in populations disproportionately affected by the disease based on race, ethnicity, and gender. In order to best serve our mission, TLI has compiled information and developed resources based on recommendations made by a group of healthcare professionals and people living with lupus.

About Lupus

Systemic lupus erythematosus, referred to as SLE or lupus, is a chronic (long-term) disease that most commonly causes rashes, arthritis, inflammation, swelling, and fatigue. It is sometimes called the “great imitator,” because people often confuse lupus with other health problems due to its wide range of symptoms.Lupus can affect many parts of the body including the kidneys, lungs, heart, and brain. It can vary from mild to severe and usually alternates between periods of activity, reduced activity, and even remission.

While an early diagnosis improves quality of life and patient outcomes, receiving a lupus diagnosis can be a difficult and timely process. Therefore, it is important to know the signs, establish good communication with healthcare professionals, and develop a self-care plan upon receiving a lupus diagnosis. With proper diagnosis and treatment, the disease is now more manageable than in years past, allowing people affected by lupus people to live full, productive lives.

Learn More

Empower your initiative.

Get the facts. Know the signs. Take action.

The earlier lupus is diagnosed, the better, so it’s important to be able to recognize the signs and symptoms. Learn more about the disease and get answers to frequently asked questions including what causes lupus, who gets the disease, how its diagnosed and what treatment options are available.

Health Disparities

Health disparities are the differences in the incidence, prevalence, mortality, and burden of disease (and other adverse health conditions) that exist among specific populations and demographics. In the case of lupus, clinical manifestations indicate a difference in disease prevalence based on race, ethnicity and gender:

  • Women are 9 times more likely to develop lupus than men
  • Black women are 3 times more likely to develop lupus than White women
  • Lupus affects up to 1 in 250 Black women in the United States
  • Hispanic, Asian, and American Indian/Alaskan Native populations are also more likely to develop lupus
  • Specific racial/ethnic minorities with lupus have mortality rates at least 3 times as high as White individuals

Health disparities in lupus can have complex causes. Therefore, reducing health disparities in lupus can require broad and complex solutions at the individual, community, healthcare system, and population levels. We work to eliminate health disparities in lupus and improve health outcomes for people living with lupus by providing lupus educational resources to a broad and complex audience that includes healthcare providers, medical students, people living with lupus and lupus supporters. Take the initiative – download and share our complimentary lupus resources for patients and supporters.

Learn More

For Patients & Supporters

Self-Advocacy Tools & Resources

If you’ve been diagnosed with lupus, it is important to understand what you need to successfully manage the disease and your overall health. Get tips, tools, and advice from doctors on how to cope with and manage lupus.

Featured Resources

Ten-Part Video Series

Lupus, What You Need to Know

If you think you may have, or may be at risk for lupus, it is important to take action. Begin by seeing your doctor as soon as possible. Remember that diagnosing lupus can be difficult and takes time. Making a correct diagnosis requires good communication between you and your doctor.

With proper diagnosis, treatment, and knowledge, people with lupus can live full, productive lives. In learning about lupus and how to manage it, we recommend that you start with this ten-part video series on lupus.

Closed Captioning

Video Transcripts

Part 1 - What is Lupus?

Patient 1: It started in the winter when my fingers would turn blue in the cold and I had pain in my hips, knees, shoulders, and hands.

Patient 2: I worked out all the time at the gym and I thought maybe I just needed to slow down a little, so I waited before seeing a doctor.

Patient 3: I had high fevers and my joints were stiff, my hands were red and swollen, and it hurt to grab the steering wheel when I drove the car.

Patient 2: Although I would get a good night’s sleep, I woke up still not feeling rested and my joints hurt all the time.

Patient 3: I felt unbearable pain and ended up in the Emergency Room.

Patient 1: At first the doctors gave me anti-inflammatories thinking I had arthritis, but I found out that I have lupus. I didn’t even know what lupus was.

Speaker: Did you know that there are over 1.5 million Americans living with lupus? Even so, many people haven’t heard of the disease or if they have they’re not sure what it is and what can be done to treat it. That’s what we’ll be talking about in this program.

Lupus is a chronic condition of the immune system. The immune system is your body’s natural defense against harmful invaders like bacteria and viruses. It is a complex system with many ways of fighting off attacks. But lupus, for reasons we do not fully understand, causes the immune system to attack itself. This is called an autoimmune condition.

When this occurs in multiple parts of the body, it is called systemic lupus erythematosus or SLE. SLE is the most common form of lupus and will be the emphasis of this program, but other forms of the disease exist. Some people with only skin involvement have cutaneous lupus which is sometimes called discoid lupus. Approximately 10 percent of people who have cutaneous lupus will develop SLE. In drug-induced lupus, some drugs have been reported to cause lupus-like symptoms in a small number of people. These symptoms disappear when the medication is stopped.

When SLE causes the immune system to attack itself, you might experience many different symptoms. Some of these are Painful or swollen joints. Sores in your mouth or on your skin that do not heal. Rash across your nose and cheeks. A fever of over 100° F for several days. Sensitivity to sun or light that causes a skin rash to appear or get worse. Fatigue and weakness for days or weeks at a time, even after plenty of sleep. Or sudden, unexplained hair loss.

As you learn about the problems that can occur in lupus, it is important to remember that no two people with lupus are exactly alike. Just because someone else with lupus has kidney issues does not mean you will have problems with your kidneys now or in the future. The symptoms and frequency of symptoms can be different in each person and can range from mild to severe. Many of the symptoms we just mentioned are found in other common conditions, which is why it can be difficult to diagnose people with lupus.

Blood tests are helpful in detecting lupus, but there is no single test to identify this disease. If your doctor suspects you may have lupus, you may be referred to a rheumatologist. Rheumatologists specialize in treating conditions like lupus and can often confirm your diagnosis. Keep in mind, sometimes several visits are required before enough information is gathered to make an accurate diagnosis.

Lupus can affect people of any age or sex. However, 9 out of 10 people with lupus are women and most of those develop lupus between the ages of 15 and 45. Also, certain racial and ethnic groups are at higher risk for developing lupus. This includes Americans with African, Asian, or Hispanic ancestry as well as certain Native American tribes.

Part 2 - When Lupus Flares Up

Patient 3: The first time I had a lupus flare, I wasn’t exactly sure what was happening to me. I was visiting my family and we spent a lot of time outdoors in the sun. My head started to hurt. I felt weak and tired. And my joints and muscles ached. I had a rash on my face, chest, and arms and I also had sores in my mouth. My doctor later told me that I was experiencing a lupus flare and that I must wear sunblock and that there are many other potential triggers of lupus flares.

Patient 1: I noticed that when there is a lot of stress in my life, my flares are worse and last longer. Two years after I was diagnosed with lupus, I lost my job and got really stressed out. Even though I had been stable for a while, a few days after losing my job, I couldn’t get out of bed. My body hurt all over– my knees, feet, and hands were swollen. My hair started falling out and I lost my appetite. Now I understand how important it is to try to control things that make me feel stressed, see my doctor regularly, and take my medications like the doctor told me.

Speaker: Sometimes the immune system can attack itself and cause problems. This is what doctors often call a lupus flare. And the treatment here can be to increase or add medications to lessen the immune response.

Next, keep in mind that medication, important as it may be in our treatment and management of lupus, can also have potential side effects. It is important you speak with your doctor and pharmacist to learn what side effects your medications may have and what to look out for.

Since lupus is a disease that affects the immune system and many patients with lupus are on medications that may lower the immune system, infections can occur. This can often feel or look like lupus activity.

It is important you communicate with your doctor if your symptoms do not improve with treatment.

Finally, remember that you can develop problems or medical conditions just like everyone else. Just because you have lupus doesn’t mean you can’t have other medical conditions that affect the way you feel. It’s important to identify and write down all the things that make you feel poorly so that you know what you need to tell your doctor so he or she can determine whether you are sick or if you are having a lupus flare.

Sometimes, the issue is clear and can be resolved quickly. Other times, tests and follow-up visits may be needed. Either way, the information you give them will be critical.

Lupus can be confusing. It can seem overwhelming because so many different things can affect how you feel. And unfortunately, there is no quick way to know what issue is causing certain symptoms. However, you are your best resource. Over time, you will learn to distinguish these issues. And again, it will be important to communicate what you have learned with your rheumatologist, and your primary care or general physician.

Part 3 - Health Disparities

Patient 2: When I found out that I had lupus, I didn’t know anything about this disease. I had so many questions for the doctor. How did I get the disease? Is it contagious? Is lupus curable? Since then I’ve learned a lot more about my condition. I know lupus is more common in women and can often be more severe in certain ethnic groups.

Patient 1: After living with lupus for many years, I have met a lot of people with lupus– and many of them are people of color. I know that some of us are reluctant to participate in research because of the distrust of the medical community, or because we sometimes just don’t see the value of participating. But without our input, it is hard for researchers to learn more about how lupus affects us. Each group of people is different and we all need to be represented in research.

Patient 3: I’m very lucky because I am bi-lingual. I know many other Hispanic people who do not speak English and want to learn more about lupus or participate in clinical trials. For them, finding information and resources in Spanish is hard, and even communicating with healthcare providers can be a huge barrier.

Speaker: One of the most obvious barriers to better treatment is access to healthcare and medication. For some patients, language barriers are also a problem– making it hard to communicate with healthcare providers or understand the information written in medical pamphlets and brochures.

While the medical community is making efforts to make sure bilingual materials are available and providers are taught to address the needs of a diverse population, patients are encouraged to be their own advocate.

It is important for people living with a chronic illness to be empowered to ask questions and feel comfortable asking for the help they need.

Part 4 - Patient & Physician Relationships

Patient 3: When I was diagnosed with lupus, I was young, and communicating with the doctor was often challenging and many times frustrating. My parents didn’t speak English, and though I am bilingual, I was young and unsure about how to translate the things he said. After seeing the doctor they would ask me a lot of questions that were difficult for me to answer because I didn’t understand everything myself.

It was also hard for my rheumatologist to manage my lupus because my parents were not able to tell him what was happening to me and I was afraid, to be honest about my symptoms.

Patient 2: In my culture, we sometimes seek help from healers. And there were times my parents were tempted to take me to a healer who promised to cure my lupus. Now that I understand what lupus is and the consequences of not taking my medicine, I’m glad they didn’t.

Speaker: Some patients are embarrassed to ask questions when they visit their doctors or even forget questions they planned to ask. Others are afraid to tell the whole story. But not asking questions or telling your doctor everything can sometimes lead you to make decisions that could make your condition worse. To get the best care, it is important to discuss all your concerns and tell your doctor as many details as you can remember.

Therefore, it is important to find a doctor you can talk to freely. If you feel nervous during your visits, ask a family member or friend to come with you. This person can help you relax, take notes, and remind you of what you had planned to talk about or even ask questions for you. Afterward, they can help you remember everything the doctor said during the visit.

Because lupus can be a complicated disease, you may have several doctors working as a team involved in your care. This team should include a rheumatologist who specializes in managing and treating lupus, and other specialists may be involved.

It is also important to have a primary care physician to deal with general health issues and assist in coordinating your care.

But, the most important person in your healthcare team is you. If you and your doctor don’t speak the same language, call his or her office before your appointment and ask if they have translators or a doctor who speaks your language. It’s important to let your doctor know right away if you don’t understand something because good communication is key to better care.

To get the most useful information from your visit, get prepared before you see your doctor. This can help reduce your stress and improve the care you receive. Plan ahead and don’t assume your doctor knows everything about you. Prepare a list of questions. Start a health diary to keep track of any changes in your health, including new symptoms. Be specific when you describe your problems. When did your symptoms start? Are the symptoms new or the return of an old problem? Are they getting better or worse? What makes them better or worse?

Do not be afraid to educate your doctor about cultural health practices. Do you take any “home remedies” or herbal teas that are common in your culture? Are you taking “natural” or alternative treatments with your prescriptions? What products do you use on your hair and skin? Always take a list of current medications, including doses and how often you take them. And if you have copies of your records from visits with other doctors or specialists, bring them with you.

Physicians must have detailed knowledge of a patient’s illness in order to provide the proper treatment. Lupus is a complex disease that demands attention so the relationship between patient and doctor is very important. It is helpful to the physician when patients’ medical records are up-to-date and routine office visits are scheduled.

Part 5 - Fatigue & Rest

Patient 2: Extreme tiredness and fatigue troubled me when I first got sick. Since then I have had other episodes of fatigue and I never know what will trigger it. Those days I have almost no energy at all. I am so tired that I cannot get up. I know it may be the first sign that something else is wrong.

Patient 1: When I can’t take breaks or get extra rest sometimes my symptoms get worse. My tiredness becomes more severe, it can be hard to concentrate because my muscles hurt and I have trouble with my memory. Because of this, some people think that I’m lazy or incompetent. It makes me feel alone because so few people understand this disease.

Speaker: Feeling tired or fatigued is one of the most common symptoms in people living with lupus. Sometimes, it can even be the first sign of a lupus flare. Extreme tiredness that lasts for long periods is called chronic fatigue, and this symptom should improve as your lupus is managed. But even if you are being treated, you might remain tired.

It can be frustrating when others cannot see how sick you really feel or when you are doing all the right things: Seeing your doctor regularly, taking your meds, eating right, exercising, getting proper rest. And you still feel exhausted.

Side effects of medications can cause fatigue. Other medical issues sometimes associated with lupus can also cause fatigue, such as thyroid disease or anemia. You may have pain that keeps you awake at night or be depressed as a result of having lupus and how it affects your life. Any of these events could be stressful and contribute to feeling fatigued.

In order for your doctor to help you manage your fatigue, it’s important to tell him/her about it. If it’s difficult to express, try giving examples of what you were able to do before that you cannot do now and how this impacts your life.

There are things that you can do to help you feel more rested. Plan your day before you get started. Include time to rest when you have more than one thing to do each day. You do not always have to take a nap, but build in some time where you can sit quietly and relax. Get at least 7 hours of sleep each night.

There are also lifestyle changes that can help you manage your lupus. Eating well is important. Although there are no specific recommendations, try to eat plenty of fruits and vegetables and do not skip meals. Smoking lowers oxygen in your blood and can reduce your energy and is even more harmful for people with lupus. Also, moderate exercise can often be helpful to people with lupus. There may be periods and specific types of exercise that provide the greatest benefit, so talk to your doctor about whether you should start an exercise program. And finally, create a support network of people you can talk to, rely on, and trust.

Part 6 - Pain

Patient 3: For people with lupus, one of the most common problems is painful joints and muscles. When my lupus flares, I often feel pain in my fingers, wrists, shoulders, ankles, and toes so severe that I can’t move.

Patient 2: At times, the pain is in my muscles and I think it is more related to stress and lack of sleep. I learned relaxation and stretching exercises to control my stress and anxiety, and those exercises help to alleviate my pain, as well.

Speaker: Nine out of ten people with lupus will report feeling some type of pain in their bones, muscles, or joints. A common reason for pain is the swelling and inflammation caused when your immune system attacks itself. Over time, muscle or joint pain can cause you to lose strength. You may have trouble lifting objects, brushing your hair, or turning over in bed. The good news is moderate exercise, approved by your doctor, can help you keep your muscle strength and normal function.

Some muscle pain that happens to people who have lupus is caused by fibromyalgia– a disease that affects pain sensors in the brain. Approximately 2 out of 10 people who have lupus also have fibromyalgia and most people who have fibromyalgia are women. Researchers believe fibromyalgia causes nerves to become overactive and the increase in nerve stimulation creates a heightened sensitivity to pain.

For people with lupus, it is important to discuss pain and plan a pain management strategy with your rheumatologist and your primary care physician.

Part 7 - Lupus Fog

Patient 2: Sometimes, I’m forgetful and I struggle to remember things. I have difficulty pronouncing words and forming complete thoughts. My attention span is really short and I find it hard to focus and concentrate. This has affected every part of my daily life… I feel lost. I mentioned this to my doctor and she told me that I am experiencing what is known as “lupus fog.”

Speaker: Lupus fog is the term commonly used for the problems many people with lupus have with thinking and memory. You may have trouble focusing or recalling names or dates. You may feel confused or have trouble expressing yourself. For some people, this confusion or lack of focus can make work or school very difficult.

Identification and treatment of lupus fog and memory loss starts with you. Your doctor may want you to see a neurologist. A neurologist is a doctor who treats the nervous system, spine, and brain. He or she will perform a variety of tests to evaluate your brain function and create a treatment plan to help you.

Part 8 - Depression

Patient 2: It took me a little time to recognize that I was depressed. I had some of the classic symptoms: feeling sad, low energy, lack of interest. I was surprised when my doctor told me that my depression may be related to having lupus.

Speaker: Depression is one of the problems often seen with any chronic illness. You may have fear about having an illness that can’t be cured or worry about the future. Sometimes the limitations of lupus lead to feelings of anger or sadness. When these feelings last a long time and start to upset your daily life or change your mood, you may be depressed. It’s important to know that depression is a medical condition and not just feeling a little off.

Clinical studies have shown that medicine, counseling, and support networks can all be useful in managing depression. The good news is that there are many treatment choices available. Your physician may talk to you about your goals and what you want to do in life to help create the best treatment plan for you.

If you are the parent or caregiver of a child who has lupus, it is important to remember that children can be depressed, too. Children may cope with serious illness in different ways than adults. You should watch for a change in your child’s mood or behavior over time. Tell your doctor what signs you have seen with your child and why you are worried. Together you can develop an approach to deal with your child’s depression.

Part 9 - Physical Appearance & Self Esteem

Patient 1: One of the first things I noticed about living with lupus was changes in my physical appearance: My weight went up and down, my hair began to fall out, and I developed a “moon face” caused by the steroids I took for my flares.

Patient 3: I discussed the changes in my appearance with my doctor and therapist and learned how to adjust my wardrobe when my weight changes. I discovered different types of makeup to cover the discolorations on my face and tried different haircuts and even wigs when I lost my hair. But I know that despite living with lupus, I can still look good.

Speaker: The physical changes many people with lupus experience can be particularly difficult for women. In many cases, these changes can impact how we feel about ourselves, lowering our self-esteem because the “face” we present to the world seems unfamiliar. Taking steps to address your concerns about your outward appearance can have a lasting positive impact on your self-image. Other choices, such as diet, nutrition, and exercise, can have a similar effect on physical appearance, self-esteem, and your overall health.

Part 10 - Nutrition & Exercise

Patient 3: Because of my lupus, I often felt exhausted and run-down. Trying to juggle my illness, family, work, and school became more and more difficult. I didn’t have the time or energy to focus on the foods that I ate, so I usually ended up eating fast food to get me through the day.

Patient 2: Some days, I barely ate anything at all. I noticed that my lupus symptoms were getting worse, so I turned to my doctor for help. She explained all the benefits of maintaining a healthy diet and put me in contact with a nutritionist to help me plan my meals.

Patient 3: I began to eat more fresh fruits and vegetables and immediately noticed a positive difference in my overall health. I have more energy and my lupus symptoms have really improved.

Speaker: Making the best dietary choices available to us can affect overall health and daily living. Try to eat a varied diet that contains fresh fruits and vegetables, whole grains, moderate amounts of red meats, poultry, and oily fish, such as mackerel, tuna, salmon, and sardines.

It is very important to avoid adding herbs, dietary supplements, or vitamins to your diet before first consulting your rheumatologist. Certain herbs or supplements may interact with medicines used to treat lupus. Herbs or supplements should never be used to replace medicines prescribed to control symptoms of lupus or medication side effects.

Discuss your diet with your doctor to plan the most nutritious meals you can. Then monitor what you eat and how you feel to keep track of foods that may trigger your lupus flares.

Exercise provides great benefits. It can help maintain a good weight, which can take the stress off joints and helps to improve flexibility and range of motion. It also improves blood pressure, blood sugar, and blood fat levels.

People with lupus should exercise regularly or engage in some kind of movement or take part in some form of activity. Long periods of inactivity can lead to weakness, stiffness, fatigue, increased sensitivity to pain, anxiety, and depression. All exercise plans should be discussed with your physician to minimize possible harm.

We understand living with a chronic disease can be challenging. By partnering with your healthcare team, and being proactive in your care, you can experience a better quality of life. For more information, visit our website.

Featured Tools

Support Guides

Patient & Physician Dialogue Guide

Diagnosing lupus can be difficult. It can take time for doctors and other healthcare professionals to piece together the symptoms to diagnose this complex disease. Since making a correct diagnosis of lupus requires good communication between you and your healthcare professional, TLI has developed this Patient & Physician Dialogue Tool to help you start the process.

Download

Self-Management Guide

Living with lupus impacts everyone differently. Each person has different strengths and obstacles that can affect how they manage the disease. It is important to understand the skills and support you need to successfully manage lupus and your overall health. TLI has developed a robust set of self-care tips and resources to help people living with lupus manage their symptoms, medication, healthcare communication, and lifestyle.

Learn More

Self-care is healthcare.

Get matched to clinical trials in 60 seconds.

Get accurate, trusted and understandable information designed to enable people with lupus to make informed decisions about participation in clinical trials.

Acknowledgements

This educational resource on lupus and health disparities was developed and produced by The Lupus Initiative® in partnership with the U.S. Department of Health and Human Services, Office of Minority Health, The Lupus Initiative Consortium and a host of experts in rheumatology, health disparities and lupus research – many of whom are named below. Others, not named here, and members of The Lupus Initiative Consortium, provided feedback at every stage of development which was integral to the quality of these materials. We hope you will use and share them liberally.

Lupus What You Should Know: Patient DVD

Contributors and Editors

  • Cristina Drenkard, MD. Assistant Professor of Medicine, Division of Rheumatology, Emory University School of Medicine, Assistant Professor of Epidemiology, Emory University Rollins School of Public Health
  • S. Sam Lim, MD, MPH. Associate Professor of Medicine, Division of Rheumatology, Emory University School of Medicine
  • Kim Schofield. Emory University School of Medicine, Grady Hospital Lupus Clinic
Back To Top