By Nokukhanya Musi
In a world where rare diseases often mean isolation, two neighbouring countries are breaking down barriers and building bridges.
For Itumeleng Morole, a 36-year-old South African cancer survivor, a stage-4 anal cancer diagnosis in 2021 was just the beginning of her remarkable journey.
The permanent colostomy that saved her life also brought new challenges – stigma, shame, and a sense of disconnection.
But Itumeleng refused to let her rare disease define her.
Instead, she founded the Ubunye Ostomates Foundation, a beacon of hope for ostomates in South Africa and Eswatini.
Itumeleng’s journey is not just about personal triumph, but about a shared struggle and a shared hope that transcends borders.
Her foundation is working tirelessly to create a community of support, awareness, and empowerment for ostomates in both countries.
Itumeleng starts her day with a routine check of her stoma.
“The first thing I do is check my stoma, clean it or change it,” she says.
But it is not just about the physical aspect; it is about the emotional and psychological toll of living with a rare disease.
“There are days where I am grateful, but sometimes it’s painful. I will have all sorts of questions with no one to answer because only God can,” she shares.
Despite the challenges, Itumeleng and others living with rare diseases have learnt to adapt, to navigate the complexities of living with a stoma.
Her foundation is working with ostomates in Eswatini, providing support and a sense of community.
“I have learnt that Eswatini and South Africa are facing the same challenges. The real challenge is little to no ostomy supply in both countries, causing health risks for ostomates,” she says.
The Ubunye Ostomates Foundation is eager to collaborate with NGOs, hospitals, and communities in Eswatini to break down the stigma surrounding ostomies. By creating awareness and promoting education, they hope to empower ostomates to live openly and without shame.
“Most ostomates in both countries are in hiding because they never knew about anyone living with an ostomy, so it is still very foreign to them,” Itumeleng explains.
Itumeleng’s journey and the work of the Ubunye Ostomates Foundation is a reminder that even in the darkest moments, there is hope.
And it is not just about surviving; it is about thriving.
“I am alive, healthy, I get to do what I love and spend time with the people I love. It is a new chapter, one that is full of purpose and meaning,” she further says.
As the Eswatini Cancer Network (ECAN) continues to champion cancer awareness and support, its Program Manager Dumsile Ngwenya emphasizes the power of community in transforming the lives of cancer survivors.
“Cancer survivors in Eswatini face significant challenges, but through community support, we can address these issues and empower survivors to thrive,” she says.
Ngwenya highlights ECAN’s collaborative efforts with the Ministry of Health and other partners to provide holistic care, including medical, psychosocial, and practical support.
“Through ECAN, we facilitate quarterly regional survivor support group meetings and an annual Survivors’ Day, creating a sense of belonging and solidarity among survivors,” she states.
Ngwenya notes that the benefits of community support are clear.
“Survivors often trust advice from fellow survivors, which improves health-seeking behaviour, treatment adherence, and overall resilience. By sharing experiences and supporting one another, survivors can rebuild confidence and advocate for their needs,” she points out.
However, Ngwenya further admits that cancer survivors in Eswatini still face significant challenges, including late diagnosis, interrupted treatment, and stigma, adding that community support helps address these issues through peer support, practical assistance, and emotional care.
“Community support plays a vital role in improving the mental and emotional well-being of cancer survivors. Opportunities to speak openly with others who understand the cancer journey help reduce isolation, anxiety, and depression,” she adds.
ECAN has seen success with initiatives like the annual Cancer Walk – Brave the Breast (BTB) Challenge, which promotes awareness and raises funds for cancer support services.
“The walk brings together survivors and the general public, providing an important platform for cancer education, promoting physical activity, and encouraging cancer screening,” she explains.
ECAN promotes awareness and reduces stigma through community outreach, media engagement, and survivor testimonies.
“By sharing accurate information and real survivor stories, we challenge myths and normalize conversations around cancer and ostomy,” Ngwenya says.
Individuals can support cancer survivors and community-building efforts by volunteering, contributing skills, and participating in awareness activities. ECAN also welcomes financial contributions and partnerships.
“Every day acts of solidarity, such as offering practical assistance, sharing information, or speaking openly about cancer prevention and survivorship, also help build a stronger, more compassionate community,” she says.
Looking ahead, Ngwenya sees opportunities to expand survivor-led networks, strengthen regional partnerships, and integrate community support into the broader health system.
“With sustained collaboration and investment, Eswatini and the region can build resilient, inclusive, and sustainable cancer support networks that leave no survivor behind.”