What is Lupus?Lupus is an autoimmune disease. Essentially the immune systems of people with Lupus view their own bodies as a threat and produce antibodies which attack and sometimes destroy the soft tissue of the body.
It is a difficult disease to diagnose because it can mimic the symptoms of other inflammatory diseases such as Rheumatoid Arthritis – as a result people can live with Lupus for many years without receiving proper treatment.
Lupus affects both men and women, however over 90% of Lupus sufferers are female and there is believed to be a connection between the hormone Oestrogen and Lupus, although further research is needed on this subject.
Why is it called Lupus?
Lupus is the Latin word for wolf. Many people with Lupus get a rash across their cheeks and nose (Lupus Vulgaris) which was once thought to resemble a wolf’s bite.
What are the symptoms of Lupus?
Lupus can range in severity from person to person, with symptoms increasing and decreasing in intensity over the course of their lives. When symptoms increase this is called a “flare” and when they decrease this is referred to as “dormant” – similar to a volcano!
Symptoms can include:
• Skin rashes
• Fatigue and exhaustion
• Inflammation of the joints
• Hair loss
• Migraines
• Photosensitivity
• Strokes
• Motor issues
• Brain fog
• Tongue ulcers
• Swelling and redness of joints
• Nausea (mainly caused by medications used to treat the disease)
• Susceptibility to infections
• Organ failure - all organs can be effected but the liver and kidneys are the most common
Is Lupus contagious?
Lupus is not contagious. Although there can be a hereditary element to the disease, there is no guarantee that a parent with Lupus will pass the disease on to children and grandchildren. It is incurable, which means that once someone contracts Lupus the disease must be managed to maximise quality of life, but it can never "just go away".
What causes Lupus?
There are a number of factors which can trigger Lupus in people. As mentioned before, sometimes there is a genetic element, but there can also be environmental factors, for example: a bad virus, trauma such as a bereavement or an accident, exposure to sunlight, strong medication and even puberty. The disease varies from person to person, making it difficult to pinpoint an exact cause.
How is it treated?
There are a range of medications used to treat Lupus. Normally, a cocktail of medications is needed to manage it effectively - although these will vary depending on the severity of the condition and how the person responds to each treatment.
Treatments include:
• Chemotherapy – in intense cases this is used to deplete the immune system
• Anti-malarials such as Quinine (Hydroxychloroquine) have been found to be very effective in managing Lupus.
• Steroids
• Pain medication such as Diclofenac and Paracetamol
• Immunosuppressant drugs such as Azathioprine, Methotrexate and Cyclophosphamide
How can I help people with Lupus?
The majority of people living with Lupus “don’t look sick”, which can lead to difficulties with employers and even friends and family. Raising awareness and keeping an open and understanding mind are the best things you can do to help those who live with this disease on a daily basis.
Websites such as butyoudontlooksick.com and
Lastly, you can read stories or watch videos made by people living with Lupus to learn how it affects them in their daily lives. One great example of this is The Spoon Theory which is written by the creator of butyoudontlooksick.com Christine Miserandino. It is a short, real-life account which uses an excellent analogy to describe what living with Lupus is like. For people who prefer to watch videos, LUPUS UK has an animation which accurately portrays the emotional and social impact Lupus can have.
Zuleika Lebow
@shewolfdiaries
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