What is Lupus?

There are different types of lupus:

Systemic lupus erythematosus (SLE): This is what most people are referring to when they talk about “lupus”. It is a “systemic” condition, which means it can impact any part of the body.

Cutaneous lupus: This is lupus that mainly or only affects the skin. People can have both SLE and cutaneous lupus, and there are different types of cutaneous lupus. You can find out more information in our “lupus and the skin” booklet

Neonatal lupus: This is a rare autoimmune condition that some babies are born with. The most common symptom is a skin rash, but it can also cause other symptoms. Generally, neonatal lupus resolves in 6-12 months without treatment or with some minimal treatment and they then do not have lupus. There’s some evidence that babies born with neonatal lupus are at slightly higher risk to go on to develop an autoimmune condition in later life, but this isn’t common.

Drug-induced lupus: This is a temporary reaction to specific medications. Once the medication is stopped, the symptoms usually improve, though this can take weeks or months. Although it has ‘lupus’ in the name, it is not “true lupus” as it’s not a chronic condition and the person does not have lupus once the symptoms have improved.

This page uses “lupus” to mean systemic lupus and lupus of the skin. Neonatal and drug-induced lupus are not “true lupus” and will not be covered here.

The cause of lupus is not certain, but research has provided evidence suggesting genes, hormones, and infections including viruses, may play a role. It is caused by a complex interaction between your body and the environment.

Although genes play a role in developing lupus it is not necessarily passed from parents to children. However, people with a history of the disease in their family may be at a higher risk of developing it. There is no genetic test available for lupus.

You can’t catch lupus from someone. Lupus is not infectious or contagious.

Lupus can affect any part of the body so it can cause a wide range of symptoms. Another important point to note is that lupus symptoms can come and go, and may change over time. When lupus becomes active and symptoms get worse or new ones appear it is called a “flare”. When lupus is quiet, symptoms are mild or may even disappear for a while the individual is in remission. 

It is important to note that there are many manifestations of lupus, and it is rare for two people to share the exact same experience. The two most common symptoms of lupus are joint/muscle aches and pains and extreme fatigue. Almost 9 out of 10 people with lupus report experiencing fatigue which can often have a big impact on their day-to-day life. Other symptoms include: rashes, anaemia, light-sensitivity, headaches/migraines, hair loss, oral/nasal ulcers, brain fog, depression and anxiety. An increased risk of miscarriage is a complication of lupus. However, with close monitoring, many people with lupus now have successful pregnancies.

Please refer to the symptoms page of the website for more information on lupus symptoms.

Some symptoms of lupus like joint pain, fatigue, and hair loss are also seen in other conditions such as thyroid disease, rheumatoid arthritis, fibromyalgia, and dermatomyositis. This overlap can make lupus harder to diagnose correctly.

Lupus is a complicated disease, and people with lupus often have other health problems at the same time. These can include Sjögren’s syndrome, Raynaud’s phenomenon, or antiphospholipid syndrome.

Lupus can affect anyone, but it is much more common in women than men. Research suggests that this may be linked to genes on the X chromosome. Women have two X chromosomes, while men have only one, which may make women more likely to develop the condition.

Lupus can appear at any age, though it often develops between the ages of 15 and 55. Around 2 in 10 of lupus cases start in childhood, which is known as childhood-onset lupus or juvenile-SLE (JSLE). Certain life stages, such as puberty, after childbirth, and menopause, can also be times when lupus develops or flares.

Lupus is more common in people of Asian, Black African, and Black Caribbean ancestry compared with White populations, and studies show it can sometimes be more severe in these groups.

This is still not fully understood, but there are some broad explanations. Many of the genes responsible for the functioning of the immune system are located on the X chromosome. As females have two X chromosomes, whilst men only have one, they are more likely to inherit genes that cause immune dysfunction. It is also recognised that hormonal activity is an important trigger. Lupus can often develop around puberty, after childbirth, during menopause and usually occurs in females between the ages of 15 to 45.

Yes, lupus can affect anyone and is found all over the world, but it’s more common in Black and Asian women than in White women.

Lupus is usually diagnosed by a rheumatologist, a doctor who specializes in the immune system, joints, and connective tissues. To see a rheumatologist, you first need a referral from your GP. The rheumatologist will look at your symptoms, medical history, and test results to make a diagnosis. More details about diagnosis can be found on the diagnosis page of the website.

Lupus is treated with a variety of medications. Because lupus can affect each person differently, treatment plans may differ for everyone. Treatment aims to prevent flares and relieve symptoms, such as joint pain, rashes, or fatigue, and to protect organs from damage. More details about treatment can be found on the treatments page of the website.

Life expectancy for people with lupus has improved greatly, and most people today can expect to live a normal lifespan. The introduction of modern therapies has saved many lives and continues to play an important role in managing the disease.

Research is helping us understand lupus better all the time. New treatments are being tested, and doctors are learning more about how genetics affect the disease. Over time, this means new medicines and better ways to manage symptoms may become available, giving hope for improved quality of life.

Many people live with lupus without even knowing it, struggling with symptoms that are often misunderstood or overlooked. Raising awareness helps these individuals get diagnosed sooner, start treatment earlier, and improve their quality of life. Greater understanding also educates family, friends, and workplaces, so people with lupus receive the support they need. Ultimately, awareness gives people living with lupus a better chance to manage their condition and live fuller, healthier lives.