Nicole Liedemann-Telukram is walking 1,400 km across South Africa to raise money and awareness for Dercum’s Disease, a rare and painful illness affecting her husband. Every step she takes shows her courage and love, as she faces tough weather, blisters, and exhaustion. Along the way, strangers offer kindness, reminding her that community support is powerful. Nicole’s journey is more than a walk—it’s a hopeful fight to help families like hers and bring attention to a little-known disease.
Nicole Liedemann-Telukram is walking 1,400 km from Johannesburg to Cape Town to raise awareness and funds for Dercum’s Disease, a rare painful illness affecting her husband. Her mission highlights rare disease challenges, promotes research, and inspires community support across South Africa.
As the early morning shadows stretch across Johannesburg, Nicole Liedemann-Telukram laces up her shoes, ready for a journey that goes far beyond physical endurance. At 37, Nicole balances the roles of mother to seven children and devoted wife to Shaun. Her footsteps on the vast N1 highway are fueled by more than personal determination—she walks for hope, awareness, and the love of a husband whose health now hangs in the balance.
Nicole’s trek from Johannesburg to Cape Town, a formidable distance of 1,400 kilometers, mirrors both a quest and a battle. Every kilometer she conquers reflects her resolve to illuminate the struggles faced by her family and many others living with a rare, painful illness. In each sunrise and in every weary stride, Nicole embodies both the spirit of the wanderer and the tenacity of a fighter.
This undertaking is not just about covering ground but about changing lives—her own, her family’s, and those of people who face similar medical mysteries in silence. Nicole’s journey weaves together themes of adversity, advocacy, and profound resilience, setting the tone for a story that is as much about community as it is about individual courage.
The seeds of Nicole’s mission were sown years prior, when Shaun—her partner in life—began noticing strange growths under his skin. As a teenager, Shaun discovered small, soft lumps on his arms and legs. Doctors at the time dismissed these as harmless lipomas, reassuring him that they were nothing to worry about. Trusting their judgment, Shaun continued with day-to-day life, but the lumps grew both in number and discomfort over time.
By his mid-thirties, those benign bumps had become a daily torment, bringing numbness, fatigue, and constant pain described as “excruciating.” Ordinary tasks became monumental challenges, and the autonomy he once took for granted began to slip away. This quiet but relentless progression forced the family on a search for answers, one that led them down countless medical corridors and through years of uncertainty.
Eventually, after much frustration and many misdiagnoses, a rare but clear diagnosis emerged: Dercum’s Disease. With fewer than 200,000 cases documented worldwide, this condition is characterized by painful, golf ball-sized lipomas scattered throughout the body. The disease remains largely misunderstood, not only for its rarity but also for the unpredictable and severe impact it has on daily life. For Nicole and Shaun, the diagnosis brought both relief and a new burden—finally knowing the enemy, but also understanding just how little the world knows about it.
Armed with information but lacking resources, the family reached out to Dr. Karen Herbst, a world-renowned expert in rare adipose disorders based in California. Dr. Herbst explained that Dercum’s Disease could be hereditary and often gets overlooked by clinicians unfamiliar with its subtle signs. She also noted that trauma—either physical or psychological—appears to exacerbate symptoms. This new knowledge brought fresh urgency, as Nicole and Shaun realized their children could one day face the same challenges.
Nicole and Shaun quickly learned that the journey toward better treatment would be a long and costly one. Dr. Herbst recommended comprehensive genetic testing and assembling a specialized medical team—endeavors that would demand financial resources far beyond the family’s means. Recognizing this, Nicole set her sights on raising R10 million, not only for Shaun’s care but also to support broader research into Dercum’s Disease.
With her goal clear, Nicole chose an unconventional but symbolic path: she would walk the length of South Africa, using her journey to galvanize support, raise funds, and draw national attention to an illness that too often remains hidden. Her route along the N1 is rich in history, running through landscapes shaped by colonialism, apartheid, and the ongoing struggle for unity and healing.
Nicole does not travel alone. Her closest friend, Neo Paballo-Mahao, drives a support vehicle, staying close by with supplies and encouragement. Zaza, their loyal boerboel dog, keeps them company and adds a comforting presence on the lonely stretches. The physical demands are immense—cold nights in the Free State, persistent exhaustion, blisters, and even bouts of illness—but Nicole’s determination never wavers. She endures each hardship with a blend of grit, humor, and emotional openness.
As Nicole makes her way through towns and countryside, she discovers an unexpected reservoir of humanity and kindness. Guesthouse owners welcome her with warm meals and a bed, while strangers pull over to offer encouragement, provisions, or simply a sympathetic ear. She documents these moments on TikTok (@nicoletelukram), sharing with followers not only the difficulties she faces but also the countless acts of generosity that uplift her along the way.
Nicole frequently expresses her gratitude for this support, admitting to moments of tears brought on by the sheer warmth and selflessness of those she meets. In a society often characterized by skepticism and division, her experience on the road reveals a deep, persistent spirit of ubuntu—the belief in a shared humanity and mutual care. Each act of aid, no matter how small, becomes a brushstroke in a larger portrait of South African compassion and resilience.
Through her journey, Nicole has found that her mission is not just about raising funds—it’s about building awareness and forging connections. By sharing her family’s story and the realities of living with a rare disease, she brings visibility to those who often feel unseen. Her presence on the highway is a living testament to the power of collective action and the difference one determined individual can make.
Nicole’s campaign is clear and straightforward. Using the BackaBuddy crowdfunding platform, she invites South Africans to support the cause—not her personal comfort. When offered new shoes, she insists on directing help toward the campaign, joking, “I don’t need fancy takkies; I’m not planning to walk again after this!” Her humor masks the fatigue but underscores her focus: every contribution should drive research and care for those like Shaun.
Awareness, Nicole believes, can be transformative. Dercum’s Disease may affect only a small number of people, but the lack of knowledge and support multiplies their suffering. By taking her story public, Nicole serves as a living billboard—sparking interest, inviting questions, and encouraging empathy. Her TikTok updates and regular interviews open a window into the realities of rare diseases, illuminating the daily challenges faced by patients and families who often feel isolated.
Nicole’s trek echoes historical and artistic traditions, where journeys serve as both protest and pilgrimage. From the marches of social justice movements to the literary wanderings of artists seeking meaning, the act of walking takes on symbolic weight. Nicole’s steps, however, are not abstract gestures; they are urgent, necessary, and anchored in love and advocacy.
In the world of rare diseases, progress often depends on the determination of those directly affected. Pharmaceutical companies rarely invest in conditions with limited commercial return, so families like Nicole’s must become advocates, educators, and fundraisers. Nicole’s efforts join a long line of grassroots campaigns that have transformed the landscape of medical research—initiatives that started small but ultimately reshaped public understanding and policy.
The R10 million Nicole seeks will do more than support her husband’s care; it could also accelerate research and awareness, offering hope to countless others who struggle in silence. History shows that such efforts matter—the Muscular Dystrophy Association, for example, began as a small group of parents but grew into a powerful force for change. Nicole’s walk stands in this tradition, proving that individual action, rooted in personal need, can spark broader change.
As she moves steadily toward Cape Town, Nicole’s journey continues to inspire those who follow her story online and in person. Her children, watching from home, see not only a brave mother but a champion fighting for their future and for every family touched by rare disease. Nicole’s pilgrimage is a living legacy of hope, activism, and the belief that voices, no matter how rare, deserve to be heard.
Nicole’s journey presses on, each day bringing fresh challenges and new displays of kindness. She has already passed through towns like Colesburg, with Hanover and Beaufort West ahead before the final push to Cape Town’s iconic shoreline. The road remains long and arduous, but every step is charged with love, sacrifice, and an unwavering faith that her efforts will matter.
No matter the final tally on the fundraising page, Nicole’s trek has already delivered something priceless: a renewed sense of community, a spotlight on an overlooked disease, and a rallying cry for others to follow. Through wind, cold, and exhaustion, Nicole Liedemann-Telukram walks not just for her family, but for all who need their stories told and their voices amplified.
Her pilgrimage is a testament to the strength found in adversity, the bonds built across difference, and the possibility that, even in a world filled with obstacles, hope can travel far—one determined step at a time.
Nicole is walking 1,400 kilometers from Johannesburg to Cape Town to raise awareness and funds for Dercum’s Disease, a rare and painful illness affecting her husband. Her mission aims to highlight the challenges faced by rare disease patients, promote medical research, and inspire community support throughout South Africa.
Dercum’s Disease is a rare condition characterized by painful lipomas (fatty lumps) scattered throughout the body. It causes chronic pain, fatigue, numbness, and other debilitating symptoms that severely impact daily life. With fewer than 200,000 documented cases worldwide, it remains poorly understood and frequently misdiagnosed, leading to prolonged suffering for patients like Nicole’s husband, Shaun.
Shaun first noticed soft lumps during his teenage years, initially diagnosed as harmless lipomas. Over time, these grew in size and pain intensity, causing significant physical and emotional strain. After many misdiagnoses and years of uncertainty, they finally identified the condition as Dercum’s Disease. This diagnosis brought clarity but also underscored the lack of resources and knowledge surrounding the illness. The family then sought expert advice and realized the urgent need for specialized care and research funding.
Nicole’s route follows the N1 highway from Johannesburg to Cape Town, covering diverse terrains and weather conditions. She is accompanied by her close friend Neo Paballo-Mahao, who drives a support vehicle carrying supplies and providing encouragement. Their boerboel dog, Zaza, also joins, offering companionship. Despite physical hardships like blisters, exhaustion, and cold nights, Nicole maintains her determination, documenting the journey on TikTok (@nicoletelukram) and engaging with communities along the way.
Nicole is fundraising via the BackaBuddy crowdfunding platform, aiming to raise R10 million to cover Shaun’s medical care and fund broader research efforts. Supporters can contribute financially, help spread awareness through social media, and engage with Nicole’s story to amplify the voices of those affected by rare diseases. Nicole emphasizes that donations directly support research and care, not personal comfort items, stressing the importance of focused aid.
Nicole’s walk serves as both an advocacy campaign and a symbol of resilience. It raises public awareness about a little-known condition, fosters community compassion, and challenges the stigma and isolation often experienced by rare disease patients. Her journey exemplifies how personal stories can spark social change, encourage collective action, and inspire others facing similar battles to speak out and seek support.
If you would like to learn more or follow Nicole’s journey, visit her TikTok @nicoletelukram or the BackaBuddy crowdfunding page dedicated to her mission.
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