Lupus: the ‘invisible’ disease
“Lupus mimics other diseases in your body and the community still doesn’t understand what it is,” says Daniella Djan who is living with the condition.
Djan’s life changed irrevocably when she was 18-years-old and diagnosed with systemic lupus erythematosus, commonly known as lupus. That was 15 years ago.
The Cape Town-based teacher says living with the condition has meant she lost many friends because they didn’t understand the condition, and it is difficult to maintain a job because she’s ill so often. It took five years for her to be diagnosed after many treatments and tests.
“Lupus can keep you out of work due to illnesses that come and go, but [getting] a part-time job has helped me. But not everyone is fortunate to get jobs and work.”
What is Lupus?
Lupus – a Latin word meaning wolf – is an autoimmune disease where the immune system attacks the body’s own cells.
“When suffering from lupus, the body is at war with itself. Something has gone wrong with the immune system and instead of protecting the body from illness and infection, the antibodies it releases wrongly identify healthy tissue, cells, and organs as foreign invaders and attack them, causing inflammation,” reads the Lupus Knows No Boundaries report. The condition can be described as soldiers in the same army who suddenly attack each other.
The cause is currently unknown and there is no cure.
Because the symptoms come and go, lupus is often referred to as the ‘invisible’ disease.
It remains quite mysterious
Djan alleges her psychologist suggested she end her life. “My first psychologist suggested I commit suicide and I did consider it many times,” she says. “In 2007 I completely lost it. In the same year I was hospitalised in a unit which cared for patients so that they could die [with] dignity.”
The Lupus Knows No Boundaries report found that 23% of people are ‘uncomfortable’ hugging someone with lupus. Close to 50% feel ‘less than comfortable’ shaking hands with someone who has lupus while 1 in 3 people are ‘uncomfortable’ sharing food with someone with lupus.
According to Djan, many people in the black community don’t understand this disease which leaves sufferers isolated. So, she has decided to document her life story in a book, Crazy Became Me: A Lupus story.
Landa Pityoi, a student currently studying radio production, was diagnosed with lupus in 2018. Before that she had rheumatic arthritis and a liver infection. The 29-year-old says living in a township means no one knows what lupus is and people try all sorts of natural remedies for relief.
“When I go to the clinic I have to explain myself every time because I cannot assume the nurses know what lupus is. It is very hard to explain it to people, especially children. I wish lupus could also get the ‘hype’ that HIV has. Lupus symptoms are similar to any other diseases or illness that people have, you may treat a rash or arthritis but it could be lupus,” she says.
There can be information booths at local clinics and other facilities where people could ask questions about lupus, she suggests. – Health-e News