THE month of May is Lupus Month, with May 10 being World Lupus Day. According to the Lupus Awareness South Africa, lupus is a “long-term autoimmune disease in which the body’s immune system becomes hyperactive and attacks normal, healthy tissue”. The symptoms include inflammation, swelling and damage to the joints, skin, kidneys, blood, heart and lungs.
Founder of Lupus Awareness SA, Tebogo Modjadji-Kekana, told the Gazette that lupus is a complicated condition.
She said lupus is not related to HIV/Aids whereby the immune system is under-active. In lupus, the immune system is overactive.
“It’s very difficult to treat. Once diagnosed you will need to go to a special doctor who can give a patient medication.
“Nobody knows how one gets lupus, but it is suspected that the causes relate to the genes and lifestyle. It’s manageable if one gets proper treatment.
“It’s such a dangerous disease because it is a condition whereby the immune system is overreacting, and cells attacks the body. Anyone can get lupus. It is not contagious,” Modjadji-Kekana said.
HIV/Aids and LGBTI peer educator Mogie Padayachee said living with lupus is not always easy.
“A lupus diagnosis can be devastating and life-changing. When explaining what lupus is to people, I usually say it’s an autoimmune disease that affects many organs. I have to say that this is one of the hardest parts of having lupus.
“Most people have heard of it but have no clue what it is. A lot of the time, I just don’t explain it to people because I honestly don’t have the energy to explain that my body is at war with itself. In simple terms, lupus is a disease in which your immune system thinks your body is a virus and starts attacking your body and organs. My close friends and co-workers are aware, but even they don’t have a full grasp on the disease unless they’ve done their own research. Not everyone with the disease is the same,” Padayachee said.
Padayachee said lupus affects everyday life in various ways, including daily pain and stiffness.
“Lupus flares are common, where you end up in bed feeling like there is no way I could get up. Saying I felt like I had been hit by a truck doesn’t begin to explain how badly I felt.It is a debilitating disease that is totally unpredictable. It is a misunderstood autoimmune disease that ravages different parts of the body.
“It is difficult to diagnose, hard to live with and a challenge to treat. Lupus is a cruel mystery because it’s hidden from view and undefined, has a range of symptoms, and strikes without warning, and has no known cause or cure,” Padayachee added.
Some of the symptoms are fatigue, swelling of joints, constant headaches, mouth sores, burning sensation all over my body, visual disturbances and skin rashes.
For further details, contact Lupus Awareness SA at 061 450 3513 or e-mail LupusawarenessSA@gmail.com