NGOs raise lupus awareness with fun walk
More awareness is needed about the symptoms, as some, like fatigue and mood changes, are chalked up to a child being a child.
The annual 10km Lupus Awareness Fun Walk took place on May 31 in Mamelodi.
World Lupus Day is recognised on May 10.
We Also Sparkle and Waratwa foundations held the walk to close off the awareness month and shine a spotlight on the illness.
Systemic Lupus Erythematosus (SLE), also known as lupus, is an autoimmune disease that affects each individual differently.
Lupus affects both men and women, and symptoms range from fatigue to joint pain and skin rashes and can affect multiple organs.
The awareness walk started in Mamelodi East on Motsumi Street, Ext 4, Moon Park to Top T in Nellmapius and back, making up a distance of the 10km.
The day started with a warm-up session by Adventure for Fun to get participants ready for the walk and ended with a festival of colours.
Speakers from both NGOs and partnering organisations spoke on the importance of annual events that commemorate serious illness.
“What I can say is that with your support, we will be able to spread awareness about lupus across the country. The more people are aware of lupus, the fewer people with die from it. At least if you know you have lupus, you can manage it. Others don’t even get that chance because it kills the organs in the body, and by the time it’s diagnosed, it’s too late,” Komati said.
She added that, despite having flare-ups and challenges, giving in to the disease is not an option.
She also insisted that those living with lupus register on their website, www.lupusfoundationza.co.za, as there are currently no statistics regarding lupus in South Africa.
Tisetso Khuele (31), a resident living with lupus, said that without the support of close friends and family, the disease would have claimed her life long ago.
“My symptoms first started with my feet swelling, my hands turning blue, I’d pass out randomly, and it only got worse throughout the years until I was diagnosed with lupus in 2009. The symptoms started when I was 14, but I didn’t know what it was. No one knew lupus, and where do you even start? So, I was shocked because it was something new, so we had to search for specialists, I had to find a doctor to help me manage the condition,” Khuele said.
She added that since being on medication, she can live more easily, maintain a job and a healthy lifestyle. She dedicated her walk to friends who have died from lupus and urged those who receive their diagnosis to keep pushing, as they can still make it.
Her mother, Esther Khuele, said her wish was that more mothers and daughters would attend campaigns such as these, as though lupus can affect men, it’s more prevalent among women.
Esther is the founder of Lila Butterfly Lupus Foundation.
“As Tiseto mentioned, her symptoms began at 14. That’s a tender age where you think it’s just changes related to adolescence, the fatigue and things like mood changes can be chalked up to a child being a child, not realising something big is on the horizon. We’ve experienced days where we woke up with her hands and feet being blue, I’m talking blue like denim. She’s not talking, eyes protruding out of the sockets, lung issues, being exposed to the sun, there were times we had to cut vacations short because of it,” Esther said.
She said more education is needed about the disease as it is a silent killer, claiming young and old lives alike.
Her organisation intends to spread the message till the country is sensitised to Lupus.
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