10/05/2018 04:44 SAST | Updated 10/05/2018 08:02 SAST

WATCH: Lupus: The Silent, Debilitating Disease Often Misdiagnosed

"I was so afraid of HIV, only to be side-tracked by lupus."

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"One of the world's cruellest, most unpredictable, and devastating diseases," is how the Lupus Foundation describes the autoimmune disease lupus.

In patients with lupus, the immune system that usually protects the body against infection creates antibodies that attack the body's own tissues and organs.


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Symptoms include headaches, numbness, tingling, swelling, seizures, hallucinations, vision problems, abdominal pain, nausea, skin rash and a butterfly-shaped rash. They may occur one at a time over time, or four or more all at once — which can in turn make initial diagnosis difficult.

"I saw at least six doctors before I was properly diagnosed," Thembisile Baloyi told HuffPost. The 39-year-old from Soweto said she was midiagnosed with allergies, depression and anxiety before healthcare practitioners could figure out what was wrong with her.

Her symptoms presented almost immediately and without warning, she said. "I would wake up fine one day, and by the end of the day be swollen all over my body. When that happens, I wouldn't even be able to go to work."

Baloyi, together with 24-year-old Tshego Maboela, and 18-year-old Lesego Kekana — from the The Lupus Drive organisation — shared their stories about living with lupus with HuffPost this World Lupus Day:

The number of lupus sufferers is still unknown, and it can take up to six years before a person who suffers from it is correctly diagnosed. This is why Maboela, Kekana and Baloyi — who call themselves lupus warriors — are calling for more awareness to be created about the disease, especially in black communities.


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