What is Lupus?
Lupus is a chronic autoimmune disease that affects many parts of the body. It can affect the joints, the skin, the kidneys, the heart, the lungs, or the brain. In lupus the body’s immune system becomes overactive and these antibodies attack healthy tissues in the body. Lupus may be hard to diagnose. It’s often mistaken for other diseases.
Types of Lupus
- Systemic lupus erythematosus 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.
- Neonatal lupus erythematosus (NLE) is a rare disorder caused by the transplacental passage of maternal auto antibodies. Only 1% of infants with positive maternal auto antibodies develop neonatal lupus erythematosus.
While there is no cure for lupus, early diagnosis and treatment can help in managing the symptoms and lessening the chance of permanent damage to organs or tissues. Because lupus is different for every person, treatments and medications are prescribed based on individual needs.
Lupus is chronic and complex and is often difficult to diagnose. There is no single laboratory test that can determine if a person has lupus. To complicate matters, many symptoms of lupus are similar to those of other diseases and can come and go over weeks and months. It can often take years for a diagnosis to be made.
To diagnose lupus, a doctor should be able to find physical or laboratory evidence of the condition, such as swelling of joints, protein in the urine, fluid around the lungs or heart, or a skin biopsy (test of a sample) that shows evidence of the disease. The doctor also will look at a person’s medical history and special tests to rule out other diseases.
Doctors use the American College of Rheumatology’s “Eleven Criteria of Lupus” to help make—or exclude—a diagnosis of lupus.
Typically, four or more of the following criteria must be present to make a diagnosis of systemic lupus.
The “Eleven Criteria”
- Malar rash: butterfly-shaped rash across cheeks and nose
- Discoid (skin) rash: raised red patches
- Photosensitivity: skin rash as result of unusual reaction to sunlight
- Mouth or nose ulcers: usually painless
- Arthritis (nonerosive) in two or more joints, along with tenderness, swelling, or effusion. With nonerosive arthritis, the bones around joints don’t get destroyed.
- Cardio-pulmonary involvement: inflammation of the lining around the heart (pericarditis) and/or lungs (pleuritis)
- Neurologic disorder: seizures and/or psychosis
- Renal (kidney) disorder: excessive protein in the urine, or cellular casts in the urine
- Hematologic (blood) disorder: hemolytic anemia, low white blood cell count, or low platelet count
- Immunologic disorder: antibodies to double stranded DNA, antibodies to Sm, or antibodies to cardiolipin
- Antinuclear antibodies (ANA): a positive test in the absence of drugs known to induce it. ANA test
Who Gets Lupus
Lupus affects 1.5 million Americans, and millions more worldwide. Most people with lupus—90 percent—are female, and most first develop signs and symptoms of the illness between the ages of 15 and 44. Men can also be diagnosed with lupus.
Some children are affected. An estimated 5,000 to 10,000 of the 1.5 million Americans with lupus are diagnosed while under the age of 18. About one in three children with lupus have mild disease, but most have a moderate disease that may be severe at times, but usually responds well to treatment.
Lupus disproportionately affects women of color. African-American women are three times more likely than Caucasian women to get lupus and develop severe symptoms, with as many as 1 in every 250 affected. The disease is two times more prevalent in Asian-American and Latina women than it is in Caucasian women. Women of Native American descent are also disproportionately affected.
Coping with Lupus
Lupus and Depression
Are you feeling helpless and hopeless, having difficulty sleeping and concentrating? These are a few of the symptoms of depression, which is common in people diagnosed with lupus.
Depression can show up in many ways: loss of self-esteem, difficulty enjoying things, frequent headaches, eating too much or too little and lack of energy. Coping with depression is essential in managing lupus.
How to Cope with Depression
- Seek help from a doctor/therapist.
- Join a support group!
- Stay involved in pleasurable activities.
- Let people know what you need.
- Know it’s okay to be a little selfish.
- Eat well.
- Prioritize to decrease stress.
- Be still and live in the moment.
- Create joyful routines and rituals.
- Know your strengths.
- Stop comparing yourself to others.
- Actively listen to your body and what it needs.
Being truly supported is a powerful feeling that many people with lupus long to have, and that can help enormously in coping with lupus.
Benefits of Joining a Support Group
A sense of connection. Meeting and talking with others who understand your feelings and concerns can boost emotional and physical well-being.
Coping skills. Gain ideas for dealing with lupus, preparing for flares, handling finances, and not just surviving but thriving with lupus.
Motivation and hope. Be inspired to take a meaningful role in your own care, and the future you envision for yourself, by sharing and listening to others.
Get your family together to learn all you can about lupus. Invite a family member to your next doctor’s appointment. Encourage discussion about the disease and allow everyone to express their feelings. They may be as confused, upset, angry, discouraged or scared as you are–these are normal reactions that shouldn’t be ignored. Sharing your feelings and experiences with each other is the key to overcoming the challenges you will face together.
Working with Your Doctor
Lupus is a lifelong disease. Although it may go into remission, it doesn’t just go away. It’s important to develop a strong and positive relationship with your healthcare professionals. Here are some tips:
- Attend appointments on time.
- Sign releases to allow your doctors to communicate.
- Be open and honest with your doctors and clearly communicate your needs.
- Ask questions and be an active listener.
- Follow doctor’s recommendations.
- Get a second opinion if in doubt.
Mind, Body & Soul
Lupus & Mind
Many lupus patients experience “lupus fog”. This is when lupus patients are unable to recall information they know, easily. This cognitive distortion can be frustrating. One out of five people with lupus experiences headaches, dizziness, memory disturbances, stroke, or behavior shifts that result from changes in the brain or other parts of the central nervous system.
To help with lupus fog try these different tips.
- Keep a diary.
- Write down when fog occurs and track what works best when dealing with it.
- Share feelings with friends and family.
- Speak to a therapist or psychiatrist.
Some patients with lupus have mild to moderate behavioral changes. Some of these behavioral changes are increased feelings of fear, feelings of hopelessness, loss of interest in activities that were previously enjoyable, and isolating self from friends and family. It’s important to speak to your doctor if you notice or someone else notices behavioral changes in you. Being able to speak to a professional can help decrease stress as you develop healthy coping skills.
Meditation can also help with reducing stress and managing symptoms of lupus. While meditating, practice mindfulness skills. Being mindful is the ability to remain in the present moment, allowing yourself to find joy in each moment. Practicing mindfulness can also help reduce stress that derives from fear of things outside of your control.
Lupus & Body
Exercise reduces fatigue, keeps you moving, and boosts your mood. Those are three great reasons to start—and stick to—an exercise program, says Terry Wahls, M.D., clinical professor of internal medicine at the University of Iowa.
Research shows that regular exercise leads to a decrease in symptoms and pain, and an increase in energy! Join a walking, running, or biking group. Start a group of your own with friends and family.
- Go to the mall and window shop
- Walk your dog or a friend’s dog
- Start gardening
- Take a yoga class
- Ride a bike
- Take a walk
- Take a Zumba/aerobics class
- Tour a museum
- Go to the zoo
- Make a scavenger hunt for your family and friends
- Outdoor/indoor rock climbing
- Take a scenic hike
- Explore a new park
Before starting an exercise regiment, please be sure to get approval from your doctor.
Lupus & Nutrition
Making sure you are well nourished is a great way to help your immune system stay as healthy as possible. Eating healthy balanced meals daily can assist with increasing energy. Fuel up daily on fruits, vegetables, and whole grains. Take a trip to your local farmers market and explore various fruits and vegetables.
Try these quick recipes below for a protein and energy packed smoothie and snack:
Banana Oatmeal Smoothie Recipe
2 whole bananas
2 cups ice
1/3 cup Yogurt – preferably Greek yogurt flavored with honey
½ cup cooked oatmeal
1/3 cup almonds
Pour all ingredients in blender adding ice in last. Blend on high for 30 seconds or until smoothie thickens.
Crunchy Cinnamon Baked Banana Chips
1½ tbs cinnamon
3 cups unsweetened banana chips
Optional: 2 tbs maple syrup
the unsweetened banana chips are evenly coated. Spread the coated banana chips out on a parchment lined baking tray in a single layer. Bake for about 8 minutes, then remove the baking tray from the oven. Place on a rack to cool before eating. Store in an airtight container.
Supporting a Loved One
When a loved one is diagnosed with lupus, chances are this diagnosis will also change your life. Being open to learning all you can about lupus and truly supporting your loved one is crucial for the success of your relationship.
Accept and acknowledge your own fears and doubts. It is hard to see someone we care about and love, sick with a chronic illness. The uncertainty of lupus can cause added stress in a relationship. Learning about lupus is important to decrease tension that may derive from anger. A Volunteer Patient Advocate once said, “lupus is the look good, feel bad disease”. Understanding that the person may not look sick, despite feeling sick, is important in supporting them.
Be open to listening to their fears, frustrations, guilt, hopes and doubts, as you share yours. Having open communication will help build mutual understanding and strengthen the relationship. Most importantly, focus on the person, not the disease. Your support can make all the difference in how you allow lupus to impact your relationship.
Accept change– lupus is an ever-changing disease. The impact that it has on the body varies from patient to patient. At times plans may change because of symptoms being unbearable. Let your loved one know this is okay; be willing to go with the flow while supporting them.
Caring for Someone with Lupus
If you are the primary caregiver, the uncertainty of the disease can create its own challenges for you. Taking care of yourself is just as important as the care you are providing for your loved one. Always remember if you’re not your best, you can’t give them your all.
Ask for help when needed. Remember that you cannot do everything on your own. It will benefit you and your loved one to ask for help as well as accepting help when it’s offered. If you do not have the support of friends and family, reach out to a Volunteer Patient Advocate, join a live support group, join a Facebook support group for caregivers, or start a group in your community.
Practice healthy boundaries: Although your support is important, do not allow it to consume your life. Enjoy life outside of your role as a caregiver. The ability to enjoy activities that are of interest to you will help you appreciate the time you spend with your loved one.
One of the greatest gifts that you can give to someone you care for is to also be good to yourself. Practicing healthy self-care by eating well, exercising, and staying mindful of what’s important can help. Seeking additional professional help such as speaking to a social worker or psychologist will aid in your goal to provide optimal care.
Managing stress is an important part of living. When faced with the challenges of chronic illness stress management can be forgotten, though it is needed the most. Being able to manage your stress can help your loved one manage theirs. Being an example of great self-care can help teach those around you how to care for themselves.
- Eat well.
- Be true to your emotions.
- Prioritize to decrease stress.
- Be still and live in the moment.
- Create joyful routines and rituals.
- Take 15 minutes to yourself daily.
- Realize any guilt you may have
- Find a local support group.
- Ask for help and accept help.
- Get a manicure and pedicure.
- Focus on things you can control.
- Be willing to relinquish some control.
- Practice healthy sleep hygiene.