Vuyo’s – An Adult with Stargardts Disease
“I had pretty much good vision throughout school. I studied in tertiary, I never really struggled. I never had a time where I couldn’t see the board or needed magnification.”
These are the words of Vuyo, a mother of two who was diagnosed with Stargardt disease in 2024, later in life than most, and while also caring for a son with his own significant medical needs. Unlike many people living with the condition, her sight had never given her trouble, not at school, not at university, not in her career. That made the diagnosis, when it came, all the more disorienting.
The turning point came during a routine workplace medical exam for a new role. An eye test flagged something wrong, first without her glasses, then, unexpectedly, even with them. An optometrist noticed something odd. An ophthalmologist ran further tests, including bloodwork, before delivering the diagnosis: Stargardt disease. “I just remember sitting in that chair, feeling very overwhelmed,” she says. “I didn’t even know what questions to ask him.” There was no treatment offered, no procedure, no prescription, only advice to protect her eyes and return in a year. “I was devastated. I didn’t even know what this diagnosis meant for my life.”
What followed was a slow, disorienting adjustment: difficulty recognising faces, danger driving at night, especially in mist or rain, and a job that suddenly felt impossible, reading through compliance policies until her eyes were red and watery, coming home to press a wet cloth over them just to cope.
It was a support group post that changed things. The first person to respond was one of Retina South Africa’s peer counsellors. “She could pick up in my voice that I’m very uncomfortable,” Vuyo says. What followed was a full circle of support: a social worker on Retina’s team offered psychosocial counselling, education, and condition-specific information, helping assess whether Vuyo had the right support around her, then connected her with Retina South Africa’s CEO, who is himself visually impaired, and spent hours on the phone answering every uncertain question she had. “It empowered me,” she says, “to go back to my family and know how to ask for help, and to go back to work and speak up when I’m struggling.”
That support mattered even more given what else Vuyo was carrying. Her son requires specialised daily medical care at home, including managing his tracheostomy, and Vuyo has had to learn to do this while her own sight is failing her. “There’s times where my mind plays tricks on me,” she admits, her fear being that something could go wrong with his tracheostomy and she wouldn’t see it in time. “But luckily he wears a monitor every day.” It’s a fear that echoes her own diagnosis back at her, the same vision loss she’s still adjusting to is the very thing she worries could put her son at risk.
Her advice to anyone newly diagnosed is honest, not falsely triumphant: “Allow yourself the time to grieve. Losing some of your sight is a big adjustment, your whole world needs to adjust to the new you.” And then, just as firmly: “Find your people. Find community. For me, that was Retina SA. That was the turning point. You might have lost some parts of vision, but don’t allow yourself to lose vision of your entire life.”
Not everyone facing a diagnosis like Vuyo’s finds that community by chance, through a support group post, answered by someone who happens to be there. This Giving Tuesday, your donation helps make sure that support, a peer counsellor, a social worker, a CEO who understands the journey firsthand, on the other end of the phone, in the hardest moment, reaches every family who needs it, not just the ones lucky enough to find it.
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