Lupus affects around 1.5 million people in the United States and more than 5 million people worldwide. Around 90 percent of people with lupus are women.
The effect lupus may have on a person depends on the severity of the disease. Some people who have severe flare-ups could be at greater risk of their lupus being life-threatening.
This article looks at whether lupus is a fatal disease, how lupus affects different areas of the body, and if there is anything an individual can do to help themselves manage their lupus to ensure a normal life expectancy.
Contents of this article:
What is lupus?
Lupus is a long-term autoimmune disease. In people with lupus, the immune system attacks and causes inflammation in usually healthy cells, tissue, and organs. Symptoms and the organs that are affected differ from person to person.
Chest pain while deep breathing may be one symptom of lupus.
Experts are unsure what causes lupus, but they think the reasons could be linked to genes, environment, and hormones.
The main symptoms of lupus are tiredness, joint pain, and rashes. Some people may have very mild symptoms. Other times, lupus can flare up and make existing symptoms more severe or cause the person to develop new symptoms.
The American College of Rheumatology list various symptoms that doctors can use as a guide to diagnose lupus. These include:
- Butterfly-shaped rash over the cheeks
- Raised oval or round rash
- Rash that appears on exposure to the sun
- Mouth or nose sores that last from a few days to over a month
- Lung or heart inflammation that causes chest pain while deep breathing
- Blood or protein in urine
- Seizures, strokes, or psychosis
- Abnormal blood test results.
If a person has four or more of these symptoms, they should consult their doctor.
Is lupus fatal?
As a result of early diagnosis and better treatment, lupus is no longer regarded as fatal for all people.
People who experience extreme flare-ups are more likely to have other life-threatening difficulties, such as damaged internal organs and tissues. How deadly lupus is depends on the severity of the disease, how the person's body responds to treatments, and other factors.
For people with lupus, some treatments can increase the risk of developing potentially fatal infections. However, the majority of people with lupus can expect a normal or near-normal life expectancy.
Research has shown that many people diagnosed with lupus have been living with the disease for up to 40 years.
In the future, scientists hope to identify people at risk of lupus through genetic studies. This will allow doctors to begin preventive treatment of known complications much earlier. They also hope to find the molecular pathways that cause lupus so they can target them for new therapies.
How does lupus affect the body?
Lupus affects almost every part of the anatomy. How the complications are handled may play a role in how long the person with the condition lives and the quality of their life.
Some of the ways that lupus may affect the body are described below.
Brain and nervous system
According to the Lupus Research Alliance, about half of people with lupus experience problems with their ability to think. Around 1 in 5 experience headaches, memory loss, mood swings, and stroke. Almost 1 in 10 people develop blood clots, which may also lead to stroke.
If headaches do not get better with over-the-counter medicine, people with lupus should tell their doctor. Some headaches can be caused by vasculitis, a condition caused by inflammation of the blood vessels.
Eye problems are common. People with lupus may notice:
- Changes in the skin surrounding the eyes
- Dry, "gritty" eyes - seen in 25 percent of people with lupus
- Inflammation of the white protective layer of the eye
- Retinal blood vessel changes - occurring in up to 28 percent of patients
- Damage to nerves that control eye movement and vision
- Sjögren's syndrome - an inability to produce enough tears - is apparent in 20 percent of lupus patients
- Impaired vision
- Vision loss.
Lupus can affect the mouth in a variety of ways. Mouth sores, also known as oral lesions or ulcers, are one of the most common symptoms and occur in around 4 to 45 percent of people with lupus.
Drugs used to treat lupus, such as corticosteroids, can sometimes cause mouth dryness, cold sores, swelling, and yeast infections.
Many people with lupus develop skin problems, and rashes or sores are very common. Up to 70 percent of individuals with lupus are sensitive to ultraviolet (UV) rays in sunlight.
A butterfly-shaped rash appears across the cheeks and nose in around 40 percent of people. This rash is usually either blotchy or red over the whole area and slightly raised.
Mouth ulcers may be a common sign of lupus.
Blood disorders are common in people with lupus, with red and white blood cells and platelets being affected. The main blood problems connected with lupus include:
- Anemia - a shortage of red blood cells
- Thrombosis - formation of blood clots
- Vasculitis - inflammation of blood vessels
- Thrombocytopenia - a condition that causes low levels of platelets
- Leukopenia and neutropenia - conditions that cause low levels of white blood cells.
Heart disease is not only a major complication of lupus, but also the leading cause of death among people with the disease. More than half of lupus patients will develop a heart abnormality at some stage.
Around 50 percent of people with lupus experience lung problems. Inflammation caused by the disease can affect the lungs, the lining of the lungs, lung blood vessels, and the diaphragm, causing:
- Pleuritis - swelling of the membrane surrounding the lungs
- Pneumonitis - inflammation of lung tissue
- Chronic diffuse interstitial lung disease - where scar tissue prevents oxygen from moving from the lungs to the blood
- Pulmonary embolism - where a blood clot blocks the flow of blood from the heart to the lungs.
Lupus that affects the kidneys is called lupus nephritis. It is thought that around 1 in 3 people with lupus may develop this disease.
People with lupus nephritis may experience weight gain; puffiness in the feet, ankles, legs, and hands; blood in urine; and high blood pressure.
If untreated, kidney disease can increase the risk of problems such as heart attack and stroke and may progress to complete kidney failure.
The gastrointestinal system stretches from the mouth to the anus. It includes the organs that digest food and drink and dispose of waste.
Many people with lupus experience gastrointestinal problems due to the disease or side effects of medication used to treat it.
Bones and muscles
For more than half of people who develop lupus, joint pain is one of the first symptoms they may experience. More than 90 percent of lupus patients have joint and muscle pain at some point.
Regular exercise is recommended for people with lupus.
Corticosteroid medications used to treat lupus can cause high blood pressure in pregnant woman and increase their risk of gestational diabetes.
Many women with lupus give birth to full-term babies without any difficulties. Women with lupus should contact their doctor before becoming pregnant to ensure the best possible outcome for both mother and child.
Living with lupus
There are many challenges that a person with lupus faces when living with the disease. Some of the medications to treat the disease can cause other problems. In order to live well with lupus, it is important to work with a doctor to ensure the right balance of drugs.
While drugs are an important part of controlling lupus, other steps can be taken by people with lupus to improve their lifestyle and their life expectancy:
- Regular exercise - reduces muscular stiffness, prevents osteoporosis, relieves stress, protects the heart
- Quitting smoking - prevents infections and heart attacks, decreases the risk of pneumonia, bronchitis, and coronary artery disease
- Resting - relieves fatigue, reduces risk of flares, decreases pain sensitivity
- Avoiding direct sun and fluorescent light exposure - protects against UV light sensitivity
- Vitamin D - prevents osteoporosis from reduced sunlight exposure
- Washing hands regularly - prevents infection
- Managing pain - along with prescribed medication, hot showers, baths, and other stress relievers such as acupuncture, tai chi, yoga, and chiropractic may help
- Managing mental health - seeking advice from a mental health expert can help with symptoms of depression.
Lupus is not an easy disease to deal with, but it can be successfully managed. Most people with lupus can expect to live a full life and have a normal life expectancy.