Genetic disorder victim now brings awareness to Lupus sufferers in SA

Lupus is an auto-immune disease that has been scientifically shown to affect people of colour, particularly females, more than it does Caucasians. Yet the deadly genetic disorder, which has no cure, is still largely misunderstood by those it affects. With Lupus, even healthy tissue is attacked as the body tries to fight off an infection.

The immune system becomes hyperactive, resulting in inflammation, swelling and damage to joints, skin, kidneys, lungs heart and blood. There are also various types of Lupus and causes. Advocate in the fight against Lupus, Sibongile Komati said she started a non-profit organisation, Lupus Foundation SA, after she was wrongly diagnosed for several years. The 52-year-old from Witbank in Mpumalanga said her symptoms first appeared at the age of 40.

She twisted her ankle at a restaurant and noticed it was severely swollen after a few hours. She was in a walking boot for the next six to eight weeks, but says the pain got worse and she ignored it. She also experienced chest pains and downplayed them until she collapsed at work. Komati said several doctors diagnosed her with depression, which she could not understand, but she tormented herself with antidepressants and painkillers. A visit to a cardiologist changed her life.

“The doctor went as far back as to when I started my menstruation and I remembered my cycle was never normal. It was painful as were my joints throughout my life. People would say I’m always complaining because I’m always sick. Some thought I was lazy. But the pain every day in different parts of my body, chest pains and migraines were real. I even had a miscarriage in my child-bearing years. She agreed that what I had was not depression,” said Komati.

After several tests they discovered blood clots in her body. She says the doctor told her that she had an auto-immune disease, of which she suspected Lupus. Komati says It was the first time she heard the word, and afterwards, she was admitted to ICU to dissolve the clots. She says it took three months for her to be fully mobile again. Her episodes of getting sick became more and more frequent, as she explained that flare-ups would be random and she would end up in the emergency room.

“They didn’t understand my condition at work. I’d be fine today and in ICU tomorrow. They said to me it was best I stay home. I begged for my job and explained that I need to work and earn money, but they let me go. I was discriminated against by others too, people saying I’m HIV-positive and others saying I’m making up strange diseases. It was frustrating that there wasn’t enough information out there,” she said.

Komati said most of the information she gathered about the disease was from abroad.

“Now I assist nurses and so forth to recognise someone who may have Lupus. It’s an expensive disease and exhausts the medical aid quickly – yet it affects those in the lower-income bracket,” she explained.

Lupus is sometimes called “the great imitator” because its symptoms may mimic other illnesses, making a diagnosis a challenge. Lupus symptoms can include extreme fatigue, fever, pain, stiffness and swelling in the joints, and a butterfly rash that covers the cheeks and nose.

 

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