‘My fight against lupus is part of my mission to empower others'
Yet, her indomitable spirit turned adversity into purpose.
Lolo (37) launched a foundation dedicated to educating others about lupus and offering support to those affected by the chronic autoimmune disease.
This is her story.
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'I was diagnosed in 2012. Basically the symptoms I experienced were joint pain and fatigue. I would sleep for eight hours and I would feel like I hadn't slept and like I had been hit by a truck. I ignored the symptoms because I was young and I thought I was okay.
But the symptoms persisted.
One day I was on the couch and I couldn't breathe. I was rushed to the hospital. I also had what they called a butterfly rash – it's a rash in the shape of a butterfly on your cheek.
That's one of the most common symptoms of lupus. Thankfully, when I arrived at the hospital, there was a doctor who immediately recognised my symptoms and suspected lupus. Her quick understanding and expertise led to tests that confirmed the diagnosis.
The first thing that came to my mind when I was diagnosed was my aunt, Kgomotso, who died from lupus at the age of 33.
She was ill for 13 years but she was misdiagnosed. Lupus is often misdiagnosed because its symptoms mimic many other medical conditions. For years, doctors believed she had arteritis [arterial inflammation], and she was treated for it until further tests finally revealed the correct diagnosis.
By the time doctors realised it was lupus, it was too late – her fingers had been amputated, and her body was deteriorating.
I started my treatment, which included steroids and antidepressants. For about two years I was good. Sometimes I even forgot to take the medication because I was doing well.
But in 2015 I had a relapse, or what we call a flare-up.
It was very severe. I was diagnosed with neuromyelitis optica (NMO) which causes inflammation in your brain, spinal cord and optic nerves. I lost my sight, I got meningitis and I was hospitalised for two months. I was wheelchair-bound. I'm partially blind in my left eye.
My life has never been the same since.
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I worked as a marketing intern at an airline. I used to wear heels but I just couldn't do that as I was sick. I started missing out on work a lot.
I eventually had to resign.
In 2023 I spent seven months re-learning how to walk, how use a fork – things most people take for granted.
Every year since 2017, I've been hospitalised due to NMO.
I hadn't heard a lot about lupus in local media, so I started sharing my story on social media. Once I started, others living with lupus shared their stories with me.
I was inspired to start Lolo Lekgoane Lupus Foundation in 2018. It was important for me to use my voice and to be an advocate.
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A post shared by Lolo Loliza Lekgoane (@lolo_lekgoane)
Lupus isn't that visible. On the outside you look okay but the battle you're fighting on the inside is completely different. I want to educate, raise awareness and offer counselling.
Every May, during lupus awareness month, my foundation has a walk in Mahikeng, in the North West.
We also do talks at schools, churches and businesses. I also run support groups on Facebook and WhatsApp and caregivers are also welcome to share their experiences.
I also do a lot of media interviews.
I feel like the government prioritises other illnesses, such as cancer and HIV/Aids but I want our battle with lupus to be recognised too.
A lot of people I've met have been sick for years, and only get diagnosed years later, like my aunt. Because of this I'm committed to raising awareness and speaking out.
Protea Hotel by Marriott Mahikeng and Clicks Mafikeng with our warriors after giving out some nice Souvenirs 👌🏾...
Posted by Lolo Lekgoane Lupus Foundation on Sunday, May 11, 2025
At these talks there's always a mother or sister who comes to thank us.
It's great to see how many people have realised they aren't fighting lupus on their own. I can't completely change their or my situation but being able to be a voice goes a long way. Being able to build community helps.
Having my mother and the support of my family and friends has really helped me on this journey.
You can manage lupus by taking your medication and taking care of your mental health.
And do things that bring you happiness, and surround yourself with people who won't keep reminding you that you're sick.'
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