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.
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