Raising awareness on lupus
Victim launches campaign, invites others to get involved
CHEST pains and painful joints. These were the symptoms that plagued Sibongile Komati for months before she was diagnosed with lupus, a chronic auto-immune condition in which the body turns on itself.
“I went to different doctors, and, initially, I was prescribed anti-depressants, which I took for two months.
But the chest pains were still there, and my joints were still sore. I was also short of breath and I was tired all the time,” recalls the 48-year-old from Pretoria.
A cardio X-ray then showed that her lungs looked like a “bunch of grapes” and she was at high risk of a pulmonary embolism (clot or clots blocking one of the pulmonary arteries in the lungs).
“I’m lucky I went for that X-ray, because I could have died. It was then that the lupus diagnosis was made,” says Komati.
In lupus sufferers, the body’s immune system becomes hyperactive and attacks normal, healthy tissue, and the result is inflammation, pain and damage to tissue.
Red herring symptoms are typical of the disease, which can appear to be a number of other conditions, from mild to serious. The most common symptom is skin rash, which appears on the face in a butterfly pattern, thus the name lupus which is Latin for “wolf”.
Joint pain and crippling fatigue are also common, but a host of other symptoms may be present, including fever, swollen lymph glands, mouth ulcers, hair loss, sensitivity to the sun, headaches, fingers turning white or blue, shortness of breath, anaemia, seizures, high blood pressure, inflammation of the membranes around the lungs and heart, kidney problems and depression. Symptoms can also come and go – periods of flare-ups and then remission.
Left untreated, lupus typically leads to cancer, heart, liver or kidney problems and osteoporosis. It can even cause blindness.
“Lupus attacks the blood vessels especially, so all your organs can be affected,” says Dr Phashe Magagane, who treated Komati and became a specialist in lupus as a result of his child’s diagnosis.
“Depending on the type of lupus, it can start in the brain, thus the headaches, or your heart and kidneys may be affected. It’s a killer, and without diagnosis and treatment, life expectancy with lupus can be as little as two years.”
The most serious type of lupus is called systemic lupus erythematosus or SLE.
Systemic means it affects the whole body and erythematosus means red.
Statistics show that SLE may be as high as one case per 2 500 people in certain populations, yet it is the most difficult to diagnose, due to it appearing as many other conditions.
“There is often a delay of many years before a diagnosis is made, which is why it is hard to gauge its prevalence. Unfortunately, the longer it is left the more difficult it is to treat,” says Magagane.
Diagnosis is based on a combination of blood tests and an evaluation of clinical criteria. But as in Komati’s case, there is often a delay in diagnosis. “Women especially just tend to carry on until a lot of damage has been done,” says Komati.
People with lupus are genetically predisposed to it, so it can’t be transmitted, and it is believed that symptoms appear with environmental triggers.
It is 10 times more common in women than in men, with black and Asian women more vulnerable than white women, and typically develops in the child-bearing years of 15 to 35. “Ectopic pregnancies or spon- taneous abortions are common with lupus sufferers, and this is one of the symptoms I look out for,” says Magagane.
Komati also lost her baby to an ectopic pregnancy. “It was a miserable time for me and my family. It was only when I started doing my own research and understanding my diagnosis, that things improved,” she says.
There is no cure for lupus, but the symptoms can be managed with medications that relieve pain and inflammation, reduce the chances of organ damage, and suppress the immune system. Drugs prescribed include anti-inflammatory and anti-malaria drugs, painkillers, corticosteroids, injectables for treating anaemia and, in more serious cases, immunosuppressants and chemotherapy drugs.
Anti-malaria medication is particularly effective in treating certain types of lupus, including the skin disorders (discoid lupus, which the singer Seal has, and subacute cutaneous lupus), mouth sores and rheumatoid arthritis.
Magagane says the steroids and anti-cancer medication “helps to protect the organs”.
It has been eight years since her lupus diagnosis, and Komati is on a cocktail of drugs – nine pills a day taken at three intervals.
“I take anti-malaria tablets, anti-inflammatory medication and painkillers, which all help to ease the symptoms,” says Komati.
“The medication is expensive and it’s difficult to predict how I’m going to feel. Some days I feel fine, others I can’t get out of bed. Every day is different.”
With treatment, between 80% and 90% of sufferers can expect to live a normal lifespan.
“I just keep a close watch on my condition, and with excellent medical support, and my friendship with other lupus sufferers, I keep the disease under the best control I can,” says Komati.
She has gone on to help found Lupus, the Butterfly Effect Foundation and is its chairwoman.
The newly formed not-for-profit organisation has been established to raise awareness about the devastating health condition and to support those affected by it.
She invites lupus sufferers and their supporters to become involved in the campaign. Visit www.lupusfoundation.co.za
I just keep a close watch on my condition, and with excellent medical support, and my friendship with other lupus sufferers, I keep the disease under the best control I can… Sibongile Komati
Lupus patient Sibongile Komati of Pretoria has done a life coaching course in order to be of greater support to the community of lupus sufferers.