Despite being one of the most commonly found diseases, lupus is is one of America’s least recognized major diseases. Awareness and accurate knowledge about lupus is lacking even though:
Lupus strikes more people than AIDS, Sickle Cell Anemia, Cerebral Palsy, Multiple Sclerosis, and Cystic Fibrosis. Combined.
Organizations across the country have come together to help promote awareness about this chronic illness. The hopes is to not only educate by spreading the truth and facts about lupus but to also one day find a cure.
How many people have lupus?
- Research estimates that at least 1.5 million Americans have lupus.
- Lupus affects one of every 900 Americans.
- More than 16,000 new cases of lupus are reported annually across the United States.
- It is believed that 5 million people throughout the world have a form of lupus.
- Because symptoms vary from person to person and lupus is often undiagnosed, it is hard to know exactly how many people do have lupus. Estimates could be a lot higher than reported.
Who gets lupus?
- Nine out of 10 (90%) people with lupus are women and of childbearing age (15-44). However, men, children, and teenagers and older individuals develop lupus, as well.
- Women of color are two to three times more likely to develop lupus than Caucasians.
- People of all races and ethnic groups can develop lupus.
- But women of African, Asian, or Native American descent are three times more at risk than Caucasians.
- Women are 5 times more likely to die from lupus than men.
- 5% of children born to individuals with lupus develop the disorder.
- Men are at a higher risk before puberty and after age 50
- African-Americans and Latinos tend to get lupus at a younger age and have more severe symptoms, including kidney problems.
- African-Americans with lupus have more problems with seizures, strokes, and dangerous swelling of the heart muscle. Latina patients have more heart problems as well
- Only 10% of people with lupus will have a close relative (parent or sibling) who already has or may develop lupus.
- However, many people with lupus have a family history of other autoimmune diseases
- Celebrities with lupus include Toni Braxton, Nick Cannon, Seal, Selena Gomez, Rapper Snoop Dogg’s daughter, Cori Broadus and Michael Jackson (deceased). Lady Gaga is also reporting that she was tested “borderline” positive for lupus.
What does “lupus” mean?
- In Latin, lupus means wolf, and erythematosus means redness. In the 18th century, doctors who first treated the disease noticed a common symptom: a red rash on the face and thought looked liked a wolf, or lupus, bite.
- Now, the red rash is referred to as the malar rash and is likened to a butterfly.
- The butterfly is a nationally recognized symbol for lupus.
What is lupus?
- Lupus is a chronic, complex autoimmune disease.
- Chronic means symptoms last more than six weeks and often for many years, if not the whole life.
- Autoimmune conditions occur when the body’s immune system turns against the body and starts attacking healthy cells and tissues instead of protecting against germs and viruses.
- Lupus is known as “the great imitator” because it’s symptoms mimic those of other diseases.
- Lupus symptoms come and go and can change suddenly.
- There is no single laboratory test that can definitively identify lupus.
- Because of all of this, it can take years before getting a lupus diagnosis.
- Early detection and treatment is the key to a better health outcome and can usually lessen the progression and severity of the disease.
- Lupus is a disease of flares (when symptoms get worse and the person feels ill) and remissions (the symptoms subside and person feels better)
- Even when lupus is in remission, the disease has not left the body.
- There is no cure for lupus. Yet.
- The cause of lupus is still unknown.
- Scientists believe there is a genetic predisposition to lupus, and also know that environmental factors such as infections, antibiotics, ultraviolet light, extreme stress and certain drugs play a critical role in triggering lupus.
- Lupus is not contagious, not even through sexual contact. You cannot “catch” lupus from someone or “give” lupus to someone.
- Lupus is not like or related to cancer. Cancer is a condition of malignant, abnormal tissues that grow rapidly and spread into surrounding tissues. Lupus is an autoimmune disease, as described above.
- Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome). In HIV or AIDS the immune system is underactive; in lupus, the immune system is overactive.
- For more about Lupus continue to read at What is Lupus?
Types of Lupus
- There are four types of lupus: systemic lupus erythematosus (SLE), cutaneous lupus, drug-induced lupus and neonatal lupus.
- 70% of all lupus cases are Systemic/SLE. Systemic lupus erythematosus (SLE) is the form of the disease that most people refer to when they say “lupus.”
- The word “systemic” means the disease can affect many parts of the body — including the kidneys, brain or central nervous system, blood and blood vessels, skin, lungs, heart and joints.
- There are two kinds of Cutaneous lupus that affect the skin: Subacute cutaneous lupus erythematosus and Discoid lupus erythematosus (DLE):
- Subacute cutaneous lupus erythematosus makes up 10 percent of lupus cases.
- About 50 percent of the time, people with subacute cutaneous lupus also have SLE.
- Subacute cutaneous lupus causes skin lesions that appear on parts of the body exposed to sun. These lesions do not cause scars.
- The most common rash of Discoid lupus erythematosus (DLE)—called discoid rash—is raised, scaly and red, but not itchy, and appear in areas shaped like a disk or a circle. It often leaves scarring.
- 10% (1 in 10) of all discoid lupus patients will develop systemic lupus.
- Drug-induced lupus occurs when certain medications trigger lupus like symptoms. Once the medication is stopped, the symptoms fade within six months, usually without any organ damage.
- Neonatal lupus happens when a mother who has lupus passes it on to her unborn child in the womb. Symptoms resolve a few months after birth and rarely cause any organ damage.
- For more on the different Type of Lupus continue to read here
How Serious is Lupus?
- Lupus can range from mild, with little to no symptoms, to life threatening.
- Even when lupus is mild, almost every case needs to be treated by a doctor. With good medical care, most people with lupus can lead a full life.
- Contrary to popular opinion, Lupus can be fatal.
- Many times the cause of death is not listed as lupus, but the condition such as stroke, heart attack, pneumonia, kidney failure or seizure was caused by a complication of lupus.
- In lupus, the immune system, which is designed to protect against infection, creates antibodies that attack the body’s own tissues and organs — the kidneys, brain, heart, lungs, blood, skin, and joints.
- 80% of SLE patients develop kidney issues at some point in their disease
- Lupus is a leading cause of premature cardiovascular disease, kidney disease and stroke among young women.
- Women with lupus are nearly five times more likely to experience a fracture from osteoporosis.
- Twenty years ago, only 40% of the people with Lupus were expected to live more than three years after being diagnosed.
- Today, between 80 and 90% of people with Lupus can live a normal lifespan.
- Lupus adds an increased risk to pregnancy. Many woman can still have a successful pregnancy but their lupus needs to be stable and they need to be off most lupus treatment medications. There is an increased risk for kidney issues, pre-eclampsia, pre-term delivery, miscarriages, and diabetes. It is also known to trigger lupus flares. If you are thinking about becoming pregnant, please discuss with your healthcare team.
Symptoms of Lupus
- The American College of Rheumatology’s created “The Eleven Criteria of Lupus” to help doctors make—or exclude—a diagnosis of lupus.
- Skin involvement occurs in up to 80% of patients.
- Many patients experience the malar, or butterfly, red rash across the cheeks and nose during flares.
- Two-thirds of people have photosensitivity
- Many lupus patients suffer from anemia, or low blood count, as well
- The most common symptom of lupus is extreme fatigue.
- 70% of patients also report painful and swollen joints.
- Many times lupus also triggers other autoimmune conditions such as Raynaud’s Phenomenon where fingertips and/or toes become pale or purple from the cold or stress
- Lupus often times causes a “lupus fog” making it hard to think, focus and remember things.
- Lupus patients are susceptible to depression and other mental conditions.
- Lupus also tends to “bring along” other autoimmune diseases. While it has not been determined that lupus causes the other autoimmune conditions to develop, many lupus patients seem predisposed to multiple conditions such as: Fibromyalgia, Rheumatoid Arthritis, Antiphospholipid syndrome, Crohn’s Disease, Multiple Sclerosis and Sjögren’s syndrome
- Continue reading for more on Lupus Symptoms
- Lupus is usually treated by a rheumatologist who specializes in treating diseases that affect the joints, muscles and bones.
- Often times lupus patients need to build a team of doctors to treat conditions in the kidneys, heart, lungs, skin and blood. See Building Your Team of Lupus Medical Specialists for more info
- Since lupus is highly individualized, and no two cases are exactly alike, the treatment also varies depending on the symptoms and needs of the patient.
- Anti-inflammatory drugs, anti-malarials, and steroids, such as prednisone, are used to treat lupus. Cytotoxic chemotherapies similar to those given in the treatment of cancer are also used to suppress the immune system in lupus patients.
- Hydroxychloroquine (HCQ) was approved by the FDA for lupus in 1955
- HCQ and Corticosteroids like prednisone were the only real treatment for SLE for 56 years
- Finally in 2011 Benlysta was approved by the FDA for the treatment of lupus.
- For more about lupus read Diagnosing Lupus and Lupus Treatment