October 2022 was Lupus Awareness Month, run by Lupus UK. It was an important opportunity to raise awareness of the disease amongst the public and medical profession.
Globally, the butterfly has become a symbol of Lupus charities. This is because some people with Lupus tend to get a rash on their face, known as a Malar Rash. The rash looks like a butterfly across the cheeks and over the bridge of the nose.
What is Lupus?
The word ‘Lupus’ is the Latin word for wolf. A severe facial rash, called Lupus Vulgaris was once thought to resemble a wolf’s bite, hence the name Lupus.
Lupus is a chronic autoimmune disease. This means that your body’s natural defence system (your immune system) has mistakenly identified healthy parts of your body as containing foreign invaders. This then causes inflammation and damage. Women are disproportionately affected by Lupus, and it is more common in black and Asian women.
Lupus is not contagious, and the causes of Lupus are not fully understood. Possible causes include:
- Viral infection
- Certain medicines
As explained below, the effects of Lupus can range from mild to severe. Depending on the severity of your condition, the symptoms that you experience will differ.
|Mild||Joint and skin problems, tiredness|
|Moderate||Inflammation of other parts of the skin and body, including your lungs, heart and kidneys|
|Severe||Inflammation causing severe damage to the heart, lungs, brain or kidneys, which can be life-threatening|
Symptoms of Lupus
According to Lupus UK, the two most common symptoms of Lupus are joint/muscle aches and pains, and extreme fatigue. Almost 90% of people with Lupus experience fatigue which can often affect their quality of life and their ability to work.
There are many manifestations of Lupus, which can vary person-to-person. Symptoms include:
- Hair loss
- Oral/nasal ulcers
- Brain fog
- Depression and anxiety
People who have Lupus often experience flare-ups (relapses) and their symptoms can become worse for a few weeks, or longer. Symptoms then settle down. The reason for the fluctuation is not known and some people do not notice any difference in their symptoms, which remain constant.
There are many manifestations of Lupus, and it is rare for two people to share the exact same symptoms.
Generally, Lupus is treated using one of the following:
- Anti-inflammatory medicines, such as ibuprofen
- Hydroxychloroquine for fatigue and skin and joint problems
- Steroid tablets, injections and creams for kidney inflammation and rashes
You can help manage your own symptoms and reduce the risk of making your Lupus worse by following this advice from the NHS:
- Use high-factor (50+) suncream – which can be prescribed for people with Lupus
- Learn to pace yourself to avoid getting too tired
- Try to stay active even on a bad day
- Try relaxation techniques to manage stress, as stress can make symptoms worse
- Wear a hat in the sun
- Tell your employer about your condition – you might be able to adjust your working pattern
- Ask for help from family, friends and health professionals
- Eat a healthy, balanced diet, including vitamin D and calcium
The NHS recommends that you stop smoking if you have Lupus, and you should not sit in direct sunlight or spend a lot of time in rooms with fluorescent lights.
If you have Lupus and are trying to conceive, you should discuss the risks with your GP, as Lupus can cause complications in pregnancy, such as miscarriage, and if you are on medication it may need to be changed.
It is common for people with Lupus to have comorbidities. These include (amongst others) Sjögren’s syndrome, Raynaud’s phenomenon, and Antiphospholipid syndrome. Some symptoms of Lupus are also commonly seen in other diseases such as thyroid disease, rheumatoid arthritis, fibromyalgia and dermatomyositis. This can make Lupus more difficult to correctly diagnose.
Lupus negligence occurs when there are delays in diagnosis or a misdiagnosis of your condition. Because Lupus is uncommon and complex, many healthcare professionals, such as your GP, may not recognise the early signs. This can result in a delay to refer and diagnose. Delayed diagnosis of Lupus can cause damage to the kidneys, skin, heart, lungs and/or the brain. The range of symptoms can mislead GPs but there are specific blood tests available.
Improved knowledge of Lupus amongst medical professionals and the wider public is needed so that there is quick and accurate diagnosis, which may prevent the onset of major organ damage for people with active but undiagnosed Lupus.
Our Clinical Negligence and Personal Injury team offer expert advice in relation to addressing misdiagnosis or a delayed diagnosis that arise as a result of negligence. For more information about our services, visit our web page here.