Understanding lupus
What is lupus?
Lupus is a chronic, complex autoimmune disease that affects millions of people worldwide. Understanding it is the first step to being diagnosed earlier, treated better, and supported properly.
The basics
Lupus in plain language
Lupus is a chronic (long-term), complex autoimmune disease. More than 90 per cent of people with lupus are women, and lupus most often strikes during the childbearing years of 15 to 45.
In lupus, the immune system, which is designed to protect against infection, creates antibodies that can attack any part of the body. This can affect a wide range of tissues and organs, including the kidneys, brain, heart, lungs, blood, skin and joints.
Its treatment can also have serious side effects. One of the common medications for lupus, oral corticosteroids, can over time lead to organ damage, infections, heart disease, osteoporosis (weakening bones) and cataracts (affecting vision). This is why the goal of good lupus care is to control the disease using the lowest effective dose, monitored over time.
Lupus is neither infectious nor contagious. You cannot catch it from someone, and you cannot give it to anyone.
Key facts
- More than 90% of people with lupus are women
- It most often begins between ages 15 and 45
- Women develop lupus around nine times more often than men
- Symptoms change over time and can come and go
- No two people experience lupus the same way
- There is no cure, but people can live and thrive with lupus
This information is provided for education and awareness and is not a substitute for professional medical advice, diagnosis or treatment. If you have concerns about your symptoms or health, please speak to a qualified healthcare professional.
Causes
What causes lupus?
There is no known single cause of lupus. Like other autoimmune diseases, lupus has a genetic predisposition.
Experts also think it may develop in response to certain hormones, such as oestrogen, or to environmental factors. An environmental factor is something outside the body that can bring on symptoms of lupus or make them worse.
Studies show that lupus has genetic components. Identical twins of people with lupus have around a 25 per cent chance of developing it, compared with about 2 per cent for non-identical twins. Roughly 10 to 12 per cent of people with lupus also have a close relative with the disease.
Genetics
A predisposition can run in families, though most people with lupus have no affected relative.
Hormones
Hormonal factors may help explain why lupus is far more common in women.
Environment
Infections, ultraviolet radiation and some medications can trigger symptoms or make them worse.
Not your fault
Nothing you did caused your lupus, and nothing you did could have prevented it.
Signs & symptoms
People with lupus can experience a wide range of symptoms
Lupus has many possible manifestations, and no two people with lupus experience it the same way. Remember: lupus symptoms change over time and can come and go.
Interactive
Symptom reflection tool
Tick anything you have been experiencing. This is not a diagnostic test and it cannot tell you whether you have lupus. It is a way to organise what you are feeling so you can describe it clearly to a healthcare professional.
Seek medical care urgently if you have severe chest pain or difficulty breathing, a sudden severe headache, confusion or seizures, significant swelling with reduced urine output, or a high fever with a rash. Do not wait for a routine appointment.
The full list of common signs
Lupus has many possible manifestations. Signs and symptoms commonly reported by people living with lupus include:
- Joint and muscle aches, pains or swelling
- Swelling of the hands, feet or around the eyes
- Extreme fatigue and weakness
- Headache, migraines and low fevers
- Sensitivity to sunlight and UV light, including the classic butterfly rash
- Pain in the chest when taking deep breaths
- Flu-like symptoms and night sweats
- Weight gain or loss
- Sores in the mouth or nose, and oral or nasal ulcers
- Inflammation of tissues covering internal organs, with chest or abdominal pain
- Kidney problems
- Mental illness or other cerebral problems
- Hair loss
- Depression
- Haematological disorders including anaemia
- Swollen glands
- Raynaud's syndrome, which can cause fingers and toes to change colour or feel numb when cold or stressed
Most people do not understand that just because we may look “normal”, we feel anything BUT “normal”.
Why symptoms are easy to dismiss
Many lupus symptoms are invisible from the outside, and they come and go. People are often told they look well on the very days they feel worst. This is one reason diagnosis takes so long, and one reason peer support matters so much.
Diagnosis
Understanding lupus diagnosis
Lupus can be difficult to diagnose because there is no single test that can confirm or rule out the disease. Its symptoms vary widely from person to person and may overlap with those of other conditions. For most people, reaching a diagnosis takes time.
Step one
Your history and symptoms
A healthcare professional will consider your medical history and the pattern of your symptoms over time. Keeping a simple diary of what you feel, and when, makes this step far more useful.
Step two
Physical examination
A clinician looks for signs such as rashes, joint swelling, mouth ulcers, swollen glands and evidence of inflammation.
Step three
Laboratory tests and investigations
Blood tests check antibody levels and look for signs of inflammation, anaemia and organ involvement. Urine tests can show whether the kidneys are affected. No single result is conclusive on its own.
Step four
Specialist referral
Depending on the symptoms and organs affected, you may be referred to a rheumatologist or another specialist for further assessment.
Step five
Ongoing monitoring
Lupus is monitored over time through regular assessments and blood tests. Diagnosis is often the beginning of a long-term relationship with a care team, not a single moment.
Why early diagnosis matters
Lupus can damage vital organs without obvious warning. Early diagnosis means earlier treatment and monitoring, helping prevent permanent organ damage, reduce complications and improve quality of life.
In Africa, where many people face delays in diagnosis and access to care, early detection can make the difference between living well with lupus and living with preventable complications.
Questions worth asking your clinician
- Could an autoimmune condition explain these symptoms together?
- Which tests would help rule lupus in or out?
- Should I be referred to a rheumatologist?
- Are my kidneys being checked?
- What should make me come back sooner?
My diagnosis took almost five years. I had been treated for nerve disorders, enlarged ovaries, pneumonia and magnesium deficiency before anyone said the word lupus.
Treatment & management
What happens after a lupus diagnosis?
For many people living with lupus in Africa, getting diagnosed is only the beginning.
The cost of medicines and tests, long distances to healthcare facilities, limited access to specialists, and other financial and practical challenges can make it difficult to get regular care.
If this is your experience, you are not alone, and it does not mean you have to give up. Talk to your healthcare provider about the challenges you are facing. Ask about available options: affordable medicines, payment arrangements, referral services, or other sources of support. Where possible, connect with lupus patient groups and community organisations that can help you find information, support and available services.
At the Lupus Foundation of Africa, we believe that access to quality lupus care should not depend on where you live or how much you earn. We work to amplify the voices of people facing these barriers and advocate for more accessible, affordable and equitable lupus care across Africa.
You deserve care. Your circumstances should not silence your voice.
What treatment usually involves
Treatment varies from person to person and is decided with your clinician. It commonly includes a combination of:
- Antimalarial medicines such as hydroxychloroquine, which can help with fatigue, joint pain and rashes
- Corticosteroids to bring inflammation under control, used at the lowest effective dose
- Immunosuppressive medicines for more severe disease or organ involvement
- Biologic therapies that target specific parts of the immune response
- Regular monitoring of blood, kidney function and overall disease activity
- Lifestyle measures including sun protection, regular gentle exercise, rest and dietary changes
Never start, stop or change a lupus medicine without speaking to your clinician. Stopping treatment when you feel well is one of the most common causes of a serious flare.
Frequently asked questions
Your questions, answered
Common questions about lupus, its diagnosis, treatment and everyday management.
Studies show lupus has genetic components. Identical twins of people with lupus have around a 25 per cent chance of developing it, compared with about 2 per cent for non-identical twins. Around 10 to 12 per cent of people with lupus also have a close relative with the disease.
Disease triggers include infections, ultraviolet radiation and certain medications. Hormonal factors may explain why women develop lupus approximately nine times more frequently than men.
Lupus is often called the “Great Mimic” because it resembles other conditions. Diagnosis combines clinical features and blood tests. Common features include butterfly rashes, arthritis, mouth ulcers, swollen glands, fevers, and inflammation of heart and lung tissue. The disease can also affect the kidneys and the central nervous system.
Monitoring involves regular assessments with a rheumatologist and blood tests that check antibody levels and disease activity over time.
Treatment varies by patient. Hydroxychloroquine, introduced in 1955 for malaria, helps with fatigue, joint pain and rashes. Severe cases use corticosteroids and immunosuppressive drugs such as methotrexate. Belimumab (Benlysta) blocks B-cell activation, and rituximab reduces B-cells.
Lifestyle modifications can also have a significant impact, including regular aerobic exercise and dietary changes.
Recommended diets feature oily fish, vegetables, semi-skimmed milk and white meat, while minimising cholesterol. A calorie-controlled diet with a reduction in alcohol and salt intake is also advised. Research suggests diets low in saturated fat and supplemented with fish oil provide benefits.
Any dietary change should be discussed with your clinician, particularly if you have kidney involvement.
Clinicians must balance the benefits of medication against side effects. Steroids work quickly but carry risks of bone thinning, hypertension, diabetes and infections. Immunosuppressive drugs control symptoms but increase susceptibility to infection.
Distinguishing active lupus from medication side effects further complicates treatment decisions, which is why regular monitoring and an open conversation with your care team matter so much.
Lupus does not significantly affect fertility. Disease remission at the time of conception reduces the risk of flares. Complications can include premature delivery and pre-eclampsia. People who carry antiphospholipid antibodies face a higher risk of miscarriage. Around 35 per cent of patients carry anti-Ro antibodies, which carry a risk of neonatal lupus rash and heart block that may require a pacemaker.
Methotrexate is not safe in pregnancy. Hydroxychloroquine and prednisolone are considered safe during pregnancy. Plan pregnancy with your rheumatologist and obstetric team wherever possible.
No. Lupus is neither infectious nor contagious. You cannot catch lupus from another person through any kind of contact, and a person with lupus cannot pass it to anyone else.
Many people with lupus work, study, raise families and build careers. Fatigue and unpredictable flares are real, and some people need adjustments such as flexible hours, rest breaks or a change in role. Understanding employers make an enormous difference.
Read our guidance on navigating lupus and work.
All medical content on this website is written for education and awareness and is reviewed against established patient-information sources. It is not a substitute for professional medical advice, diagnosis or treatment, and it is not a replacement for your own clinician's guidance. If you have concerns about your symptoms or health, please speak to a qualified healthcare professional.
Newly diagnosed and not sure where to start?
We have set out the first steps that most people find helpful, in the order that usually helps most. Take it at your own pace.