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Young woman tells of pain and stress of living with ‘invisible illness’ known as lupus disease

TINA Dlamini who lives with lupus disease. l SUPPLIED

TINA Dlamini who lives with lupus disease. l SUPPLIED

Published May 26, 2022


DURBAN – A young woman living with Lupus has shared the stress and anxiety she is enduring in her fight against an inflammatory disease that develop when the immune system attacks its own tissues.

Tina Dlamini, 26 , from the Eastern Cape, was diagnosed with lupus disease just over a year ago.

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She said what began as an intense feeling of exhaustion was quickly followed by an excruciating pain on the left side of her rib area.

Regardless of the pain, she continued to ignore it with hope of it eventually subsiding, she said.

After some time, Dlamini said she became immobile and had to be carried to places such as the bathroom.

She continued to try and live this way until she eventually went to hospital.

Her condition worsened when her joints locked up and she completely lost mobility a while after being discharged.

She later returned to the hospital to run more tests and she was diagnosed with lupus disease.

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“I have lost certain parts of who I am. I have lost myself in a way and have become ‘that girl with lupus’. I call it the ‘invisible illness’, because people cannot pick it up from just looking at you. Some days I am just really down, and it has amplified my depression,” she added.

The Month of May marks the commemoration of World Lupus months where people come out in their numbers and dress in purple, or don a purple ribbon, among other activities, to promote awareness of the disease.

Dlamini says the diseases has taken an emotional toll on her as well.

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She attributes her resilience to a strong support system and a supportive family and friends.

She encouraged people to know their health and be kind towards others.

“The disease has affected me in various ways. I have constant visits to specialists and I take at least 10 pills daily. I have to carry sunscreen all the time (and suffer) extreme joint pains.

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“I was informed that I have inflammatory arthritis. I also get random nose bleeds, my joints lock up and I feel extremely tired during the day. I have to maintain a strict diet,” she added.

According to rheumatologist, Dr Ajesh Maharaj, lupus, or systemic lupus erythematosus (SLE), is an autoimmune disease where the immune system of the body undergoes dysregulation and the body starts "attacking itself".

He added that the disease predominantly affected young females of child-bearing age. Between 90% and 95% of the patients afflicted by SLE are females and about 5% to 10% are males.

He confirmed that it is an incurable disease. “Sadly, the disease is not curable but can be well controlled with medication. Patients that are diagnosed with lupus need long-term medication and follow-up with a rheumatologist,” he stated.

According to Suzie van der Walt, of Lupus South Africa and Andrea’s Gift, an organisation that supports survivors of Lupus, support can be given to survivors in various ways.

“We first of all make sure they are seeing a rheumatologist. Our medical professional will evaluate the medication they are taking, if necessary, because as you can imagine, some patients can fall through the cracks in our health system,” she said.

Van der Walt added that they had a team that provided education and support online, and support groups via WhatsApp. They also have a large online platform for patients to ask questions and view their online and educational content.

“We also do hospital visits and connect with patients, providing them with a bag that contains goodies that warriors need. We are also lobbying for new medication, that was developed specifically for lupus, to be registered in SA, which will benefit lupus warriors tremendously,” she added.

She relayed a message to survivors of lupus disease.

“A lupus diagnosis is scary and most people don't understand the disease, but learn as much about lupus as you can. With the right treatment plan, lifestyle changes and with the support of your loved ones, you can live beyond lupus,” said Van der Walt.