Lupus disease shrouded in mystery
MUCH still needs to be done, when it comes to research, support and government policies, around Lupus, a rare auto-immune chronic disease, according to non-profit organisation, The Lupus Drive.
Lupus is when your immune system cannot tell the difference between foreign invaders and your body’s healthy tissues; as a result, it creates auto-antibodies that attack and destroy healthy tissue.
Earlier this month, 25-yearold Vusi Nhlakanipho Zuma, the son of former president Jacob Zuma, passed away due to Systemic Lupus Erythematosus (SLE).
He was buried at the weekend.
Lupus Drive founder, Pontso Moiloa, said: “The disease is still very foreign to us.There is not enough research around this disease in South Africa, we are trying to establish more. A lot of mystery still surrounds who gets it and how it starts.
“But it causes a lot of deaths and, by the time most people are diagnosed, it’s either too late or they become suicidal.”
She added that, while the disease claimed many South African lives because it is not commonly known, “we continue to struggle with early or timeous diagnosis or even acquiring better treatment for the condition”.
“We have created programmes of advocacy, to try to get the government to not ignore Lupus.
“The organisation also has a support group where they currently assist 183 people suffering from Lupus,” said Moiloa.
“Patients experience many challenges; like when a patient experiences flare-ups, their face or hands get swollen or become purple. It is not easy to treat. Many people feel isolated because they are constantly sick. Many can’t get life cover, because the disease is not categorised.”
In a statement, the organisation said: “We have been on a drive to educate South Africans about Lupus.
“We have also been trying to reach as many places as possible to allow for other Lupus patients to get support and not experience the isolation that a lot us felt when being diagnosed – because that was the first time most of us had heard of the illness.
“We have done marches to the Department of Health in Johannesburg and Pretoria, and have sat down with the Department of Social Development and the Gauteng regional office with the hope that the government will more robustly focus on Lupus and provide patients with much-needed support.”
In honour of Vusi, and the many other lives lost, as well as Lupus survivors battling the illness on a daily basis, the organisation will host an Evening of Hope gala dinner on September 28 at a cost of R450. The venue still has to be confirmed. For more information on the event and the work they do, The Lupus Drive can be found on Facebook, Instagram and Twitter.
Gala event to honour the life of Vusi and other Lupus sufferers