News24 | This woman is walking from Joburg to Cape Town to raise awareness of husband's rare disease

Nicole Liedemann Telukram will on Wednesday begin a 45-day walk from Johannesburg to Cape Town in a bid to raise awareness and funds for her husband Shaun's rare disease. (Nicole Liedemann Telukram/Supplied)

• Four years ago, Nicole Liedemann Telukram and her husband Shaun's lives were upended by a rare disease diagnosis.
• Shaun struggles with Dercum's disease – a rare condition characterised by painful growths of fatty tissue called lipomas.
• Now, inspired by TikTok star Gump Suzuki, Nicole will walk from Johannesburg to Cape Town to raise awareness and funds for rare diseases.

Nicole Liedemann Telukram will on Wednesday begin a 45-day walk from Johannesburg to Cape Town in a bid to raise awareness and funds for her husband Shaun's rare disease.

Shaun, also known as Sathish, has struggled with lipomas for most of his life. In 2021, his condition deteriorated and he was diagnosed with a rare disease called Dercum's disease, also known as Adiposis Dolorosa.

It's characterised by painful growths which can occur anywhere on the body. They are often tender and can cause significant discomfort, and in severe cases can be so debilitating as to require a wheelchair.

As a result of his diagnosis, the 39-year-old Shaun lost his job as an accountant, and the family's routine has been upended ever since.

"He had the lumps since 16 but it wasn't as troubling as it is today. As he got older, that's when it really started to affect him. Until then we were just like a normal family, but when he got diagnosed, I was in denial about it. From what our life was, it's taken quite a drastic turn. He can't function without medication," Nicole said.

Not built to run, can walk for those who can't

Now, the mother of seven has decided she wants to take on the 1 400km walk from Johannesburg to Cape Town, hoping that her 45-day stint can raise awareness for rare disease research. She will begin her journey at Brackendowns police station in Alberton on Wednesday at 07:30.

• Read Nicole's Given Gain page and Rare Diseases SA page.

The 37-year-old Nicole was inspired by the Japanese TikTok star Gump Suzuki, who trekked from Kenya to Cape Town earlier this year, pulling his trusty rickshaw along with him.

But unlike the very likeable Gump, who was doing it "Just For Fun" – as the name of his Netflix documentary states – Nicole wants to walk for those who can't.

"I'm not built to run," she laughs. "But walking, I thought that could create people talking and spread the message of awareness. I told my husband I wanted to do this for Dercum's. We need to find a cure."

Nicole plans to camp along the way, hoping many South Africans along the route will assist with donations, like socks, as she walks. Her best friend Pabello will accompany her in a safety vehicle, along with her trusty boerboel Zaza. Shaun will look after their children during this time.

Ultimately, Nicole is starting small and just going for it, but she dreams of raising between R200 000 and R500 000, half of which will go to Dercum's disease research and the other to the Rare Diseases SA organisation for other ailments.

More than that, she wants to meet Dr Karen Herbst in the US, a leading researcher on Dercum's disease.

"I want to meet up with the correct scientists and try to find a cure for Dercum's. And because it's hereditary, this is why I am also doing this. I wouldn't want my sons going through what my husband's going through."

'Please welcome those with disabilities with open arms'

Nicole plans to end her walk in mid-June at the V&A Waterfront, and she will be documenting her journey on TikTok at @nicoletelukram.

She is also inviting other South Africans along the route to join her for a kilometre or three if this cause resonates with them.

To learn more, go to her page on the Rare Diseases SA website here or you can support at the Given Gain platform here.

Nicole's final message before embarking on her trip: "Please welcome those with disabilities with open arms. At the end of the day, I'm doing this for all people who don't have a voice, who've been fighting but have lost the strength.

"It's not just about my husband, it's about so much more."

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