What is lupus? The signs, symptoms and how tech is giving patients a new lease of life

You may not have heard of lupus and, while it sounds like the name of a Harry Potter character, it’s actually a chronic illness that affects more than five million people worldwide and can damage organs.

Singer Selena Gomez recently took a break from performing to undergo a kidney transplant brought on by damage caused by lupus. With lupus, the body’s immune system turns against itself and around 10% of white women like Gomez are said to suffer from kidney failure as a result of the autoimmune disease. 

Learn more about the disease, its symptoms and how tech is helping transform the lives of patients.

What is lupus?

Lupus is an incurable illness that affects the immune system, which means it can affect any part of the body in an irreversible way – a dangerous characteristic. It’s a result of the immune system producing too many antibodies that not only attack disease but also anything in the body, good or bad. The kidneys, skin, heart, lungs and brain are particularly sensitive to the disease.

Lupus symptoms

The two major symptoms of lupus are extreme tiredness and joint and muscle pain. Other possible symptoms are rashes, depression, anaemia, feverishness, headaches, hair loss and mouth ulcers.

People living with the disease often experience “flares” – periods when their symptoms are particularly difficult to deal with. They can be triggered by stress and sunlight, and around 60% of people with lupus are sensitive to the sun. Heightened hormonal activity triggers flares, too. For example, events such as puberty, childbirth or menopause are common triggers for women who have lupus.

Other lupus symptoms include: 

  • Achy joints 
  • Swollen joints
  • Skin rash and blisters
  • Sensitivity to light
  • Seizures
  • Pale or purple fingers or toes when cold 

Who is at risk of lupus?

Most people develop lupus between the ages of 15 and 55. Women are also more likely than men to get lupus, especially women of colour. The disease is two to three more times more prevalent among women of colour than white women, according to the US National Resource Center on Lupus.

If your sibling has lupus, you are more likely to develop the condition as it has been linked to genetic mutations. Other research has tied it to environmental factors, although these typically trigger the condition if you’re already a patient or vulnerable, rather than being the cause. These environmental factors include exposure to sunlight, hormonal changes during puberty or pregnancy, for example, getting Epstein-Barr virus (EBV) has been linked to lupus, and smoking.

What are difficulties associated with lupus?

Some of the gravest complications connected to lupus start with incorrect diagnoses.

Family doctors often fail to recognise it, and it has similar symptoms to diseases such as leukaemia, muscular dystrophy and multiple sclerosis. It takes an average of seven years for a person to get a diagnosis.

To help mitigate the problem, there are specific blood tests that can be taken to check for lupus. Using an individual’s medical history can also help doctors diagnose the disease since it tends to be hereditary.

The severity of lupus varies per person, but 1-15% of people with lupus will die from complications related to the disease, including damage to organs.

Just as it is difficult for doctors to detect the disease, it’s hard to tell if someone has lupus by looking at them. This can often leave to misunderstandings – the chronic fatigue can be mistaken for laziness, and having to avoid the sun can mean skipping out on recreational activities, disrupting friendships.

Lupus treatments

Lupus is incurable, but there are medications that can mitigate its symptoms, such as steroids and immunosuppressants. Patients are typically advised to avoid direct sunlight and rest often.

Also, being open with the people around them about the disease can help. Lupus can lead to unpredictable bouts of stress, depression and pain that may be hard for others to understand if they don’t know what you are dealing with.

The technology fighting lupus

Once diagnosed with lupus, it’s very important to keep track of what symptoms you’re experiencing so your doctor can make sure you’re getting the best possible care. But, with so many possibilities for flares, it can be difficult to remember every bout of stress or sun-cause rash when the time for your doctor’s appointment comes around. That’s where the app LupusTracker Pro (£1.86) comes in.

Available only on Android at present, the app organises your symptoms in a grid, letting you look back on each day and what you recorded.

Having lupus can also lead to lonely days spent indoors when all of your friends are able to hang out outside. Isolation is hard to deal with for anyone, and people with chronic illnesses, such as lupus, are more likely to get depression. The app LupusConnect is a discussion forum that allows you to talk to others living in a similar situation.

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