The disease that does not sit still
Jackie Nangolo (23) (not her real name) was diagnosed and for three years treated for kidney problems while she suffered from a condition called Systemic Lupus Erythematosus (SLE).
SLE or Lupus is an auto-immune disease, which has no clear cause. It is an automatic process in which a person’s immune system attacks various organs or cells of the body, causing damage and dysfunction.
Her whole body was swollen, she had rash on her face and her joints where painful. Her family, at first, thought she was pregnant but after a pregnancy test, results came out negative.
For three years, she led a painful and unbearable life, hospitals and doctors’ offices became her home. It was only when a correct diagnosis was done that she was able to cope.
“Having SLE can make the demands of everyday life challenging. There are times when my joints are stiff and some mornings, I experience extreme fatigue, confusion, or depression which makes even simple tasks difficult, sometimes impossible,” she laments.
She adds: “Because you may not have any visible signs of the disease, the people around you may not realise how much discomfort and pain you are experiencing, or they may not know that you are sick at all.”
Ismael Katjitae, a well renowned physician, was the one who eventually discovered what was wrong with her. Tests confirmed that Nangolo had a very rare condition whereby she had a lot of white blood cells, which instead of attacking diseases were now attacking each other.
Research shows that SLE is called a multi-system disease, because it can affect many different tissues and organs in the body. Some patients with SLE have very mild symptoms, which can be treated with simple medications, whereas others can have serious, life-threatening complications.
Katjitae says that SLE is more common in women than men between the ages of 15 and 50 and for reasons that are not precisely understood, its peak incidence is after puberty.
While SLE is a chronic illness, it is characterised by periods when the disease activity is minimal or absent (remission) and when it is active (relapse or flare).
He adds that the causes of SLE are not really known but research shows that it sometimes runs in families, which suggests that at times, the disease might be hereditary. Symptoms in some cases might be triggered by the environment, sunlight, stress and certain medicines.
Doctors have faced many challenges when it comes to diagnosing SLE, because its symptoms can mimic other illnesses. SLE’s symptoms can be unclear, can come and go and can change. Therefore, an SLE diagnosis is made by a careful review of current symptoms.
There are certain ways to determine whether a person has this condition or not. Katjitae says that there are 11 criteria involved and for you to be diagnosed there has to be four of these criteria present.
“A doctor who is considering the possibility of SLE will look for signs of inflammation which are pain, butterfly rashes on the face, redness, swelling and loss of function at a particular place in the body. Inflammation can occur on the inside of your body (your kidneys or heart, for example), on the outside (your skin), or both,” he says.
According to Katjitae, severe cases of SLE have resulted in people developing renal failure due to water around the lungs, making the heart very weak and may result in cardiac failure. Some cases may involve attacking one’s brain or blood vessels resulting in a stroke.
In Namibia, he adds, it is not uncommon; it is not something that one has to ignore because there are a few cases of people who have it, “I do have about 10 patients in a year with the condition but there are some cases we don’t know about. A woman from the North who had been going to hospital for four years, complained of joint pains and abnormal rashes, only to discover it was SLE.”
Caring for a child with a rare condition can be a great challenge for any family. After the diagnosis of SLE was made, her parents were devastated. To them, it was the end of the world; they feared for their daughter.
Katjitae says the first step for every parent is to learn as much as possible about the disease and the special needs of a child with SLE. Parents must not only educate themselves but they also need to educate their child with lupus and their other children plus their child’s teachers, family and friends.
Even though there is no cure for this condition, all hope is not lost, those who are unfortunate enough to have the condition can go up to 70 or 80 years.
However, it depends on the severity of the condition; there is individual variability - for some, it’s severe. For others, it is not. PF