Although relatively common, the painful autoimmune condition is still poorly understood. Liz Connor finds out more.
How much do you really know about lupus? Sure, a lot more people have now heard of it – largely thanks to Selena Gomez taking to Instragram last year, revealing she’d undergone a kidney transplant as a result of her battle with the autoimmune condition.
The singer, who has 136 million followers on the app, shared a picture of herself and her friend in hospital beds, explaining that the transplant was what she “needed to do for her overall health”, having originally been diagnosed with lupus in 2015. She’s since continued to raise awareness of the condition by frequently speaking out about it in interviews – yet many people still don’t really know what lupus is, and how it affects the body.
For instance, did you know that lupus affects more women than men? In fact, 90% of cases are diagnosed in young women aged between 15-34.
Here, Dr Sarah Brewer, medical director at Healthspan, explains more…
What is lupus and how do you get it?
Lupus is a complicated condition and there are several different types that can trigger different sets of symptoms. “The most common form of lupus is called systemic lupus erythematosus, or SLE,” explains Dr Brewer.
SLE is an autoimmune condition, which means it happens because the body’s immune system has mistaken normal/healthy tissue as a threat and started attacking it.
“SLE can cause inflammation and damage that can affect the joints, skin, kidneys, heart, lungs and blood vessels,” warns Brewer.
SLE isn’t contagious and can’t be passed from one person to another. There’s still a degree of confusion over why some people develop autoimmune diseases, but many scientists believe it develops as a response to a combination of important factors. Because nine of every 10 occurrences of lupus are in females, researchers have looked at the relationship between estrogen and lupus, believing that hormones may play a part. Genetics are believed to be linked too – for example, you’re more likely to develop lupus if you have a family history of the condition. Lots of experts believe environmental factors, such as exposure to sunlight, cigarette smoke, silica, and mercury could have links too, as well as certain infections, such as by the Epstein-Barr virus (EBV), which may act as a trigger.
What are the symptoms and how is it diagnosed?
Frustratingly, diagnosing lupus is often difficult and delayed. Up to 50,000 people in the UK are thought to have the condition – but, according to research from Lupus UK, on average, it takes seven years from the onset of symptoms for a person to get diagnosed.
Lack of awareness is part of the problem, and the symptoms can also be vague and develop gradually over time, and overlap with many other conditions. However, there are a few telltale warning signs people should be aware of, including extreme ongoing fatigue, painful or swollen joints, unexplained fever, and skin rashes. “People with lupus can have many different symptoms,” explains Brewer. “A characteristic rash may appear across the nose and cheeks, resembling a butterfly in shape. Rashes can also appear on the ears, arms, shoulders, chest and the palms of the hands.”
Visible changes, such as swelling or rashes, reflect the widespread inflammation of blood vessels occurring throughout the body, but there are further symptoms that you can look out for too. “Chest pain, hair loss, dry mouth and eyes, mouth ulcers and a rash after exposure to sunlight are some of the less obvious symptoms of lupus,” says Dr Brewer. “Be aware of swollen glands, difficulty swallowing, headaches, dizziness and kidney problems too. Raynaud’s phenomenon, in which fingers turn white, blue and then red on exposure to cold temperatures, is also common.”
As well as inflammation, Brewer warns that increased blood ‘stickiness’ can occur as a result of lupus, leading to things like abnormal blood clotting, headache, seizures, memory loss and increased risk of miscarriage.
Getting diagnosed will usually involve a combination of blood tests and a referral to a specialist, who will look at both test results and the symptom patterns somebody’s been experiencing.
How is it treated?
While there’s no cure for SLE, your doctor will be able to prescribe medications that can help manage the day-to-day symptoms – these are usually anti-inflammatory drugs, or medicines that suppress your immune system. However, some people with mild symptoms do not require treatment, while others (such as those with kidney complications) may require more serious medical action.
Lifestyle changes can be part of managing lupus too, such as eating well, keeping stress levels in check and getting plenty of rest. By following experts’ advice, many people are able to manage the condition well, although lupus can be unpredictable so patients are encouraged to make periodic visits with a rheumatologist to keep things in check.
© Press Association 2018