Latest news with #AdiposisDolorosa
TimesLIVE
4 days ago
- Health
- TimesLIVE
Joburg woman completes 35-day walk to Cape Town to raise awareness of rare disease her husband has
Nicole Liedemann Telukram, a 37-year-old woman from Johannesburg, has completed her 35-day journey walking from Joburg to Cape Town. Her mission was to raise funds and awareness about her husband's rare disease, Adiposis Dolorosa, also known as Dercum's disease. Telukram began her journey on April 30 and arrived in Cape Town on Wednesday, beating her initial prediction of 45 days. She was accompanied by her friend Paballo Mahoa, who drove behind her with her dog to ensure her safety. Telukram documented her journey on TikTok, sharing regular updates with her followers. 'The journey has been amazing,' she told TimesLIVE. 'Everything has gone in accordance with God's plan. I'm grateful. It has been an emotional journey, but I made it. I'm grateful.' Telukram experienced challenges along the way, including developing blisters and suffering from hamstring injuries. She recalled a particularly challenging section near Laingsburg, where a 7km incline left her feeling drained and pulling her hamstring. 'The hill got longer and higher, but I pushed through and after getting over it I pulled my hamstring. My body was refusing. What everyone did not see behind the scenes was that I broke down a couple of times. Pabi kept telling me to listen to my body and, as stubborn as I am, I had to take her advice. I rested for a day or two to recover.'
TimesLIVE
30-04-2025
- Health
- TimesLIVE
Woman will walk from Joburg to Cape Town to raise funds for husband's disease
Nicole Liedemann Telukram, 37, has embarked on a journey to walk from Joburg to Cape Town to raise funds and awareness about her husband's rare disease Adiposis Dolorosa, also known as Dercum's disease. Telukram's husband, Shawn, 39, was diagnosed with the rare disease in 2021 after struggling with lipomas for most of his life. Dercum's disease is a rare condition characterised by multiple, painful growths of fatty tissues (lipomas). The cause is unknown, and there's no cure . The only way to manage the disease is to monitor the symptoms, which may include paralysis. Telukram said doctors didn't know what was wrong with Shawn until 2021, when his condition worsened and he was diagnosed with Dercum's disease. 'Between 2020 and 2021, it started affecting him and his job; the pain was extreme, and he couldn't focus. He was struggling to do the bare minimum,' she told TimesLIVE. 'It's affecting his mobility, his brain, it's affecting his whole life. We went from a normal family with beautiful children, not thinking something like this would ever happen. This curveball came out of nowhere.' The mother of seven said their lives took a drastic turn afterwards. 'Three weeks after his diagnosis, he was dismissed for insubordination at work; he was an accountant. They told him they didn't believe there was something wrong with him and that he was just making it up. 'Losing his income caused him to go into depression. I also had to stop going to work because I had to take care of him and our children.' Despite having no previous experience in walking long distances, Telukram is determined to achieve her goal. She said she has been training since January to get her mind and body ready for the challenge. 'The past two-and-a-half months trying to get everyone to take me seriously, it has been challenging. I had so many doors closed in my face, but it hasn't stopped me — it just kept me going. 'I have a small group of supporters, but I have had moments where I cried and asked God if I was making a good decision.' She will walk for 45 days, starting on Wednesday, and will be accompanied by her friend Paballo Mahoa, who will be driving behind her with her dog to make sure she's safe. She said she's hoping to raise a total of R500,000, of which half would go to Rare Disease South Africa and half to research for Dercum's disease in the hope of finding a cure for it. ' It's not just about the walk; it's about women's empowerment and raising awareness for the disabled. I'm walking for those who can't walk. I'm being the voice for those who are tired.' She pleaded with those who can help to support the cause by donating money that will cover her accommodation and other necessities. Telukram's BackaBuddy account is up and running for those who wish to donate.
News24
30-04-2025
- Health
- 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. 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.
News24
29-04-2025
- Health
- News24
This woman is walking from Joburg to Cape Town to raise awareness on husband's rare disease
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 800km 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. 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 Give and 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."
