Alström Syndrome is a rare condition affecting multiple organ systems, and vision loss is usually one of the first things families notice — often well before other features of the syndrome become apparent. Where Bardet-Biedl Syndrome typically follows a rod-cone pattern, Alström Syndrome usually runs the opposite way, producing a cone-rod dystrophy in which central and colour vision are affected relatively early.
For families coming from Kenya, our evaluation acknowledges from the start that this is a whole-body condition — we coordinate with whatever local care is already managing the syndrome’s other systemic features, while focusing the retinal work-up specifically on the cone-rod pattern that sets Alström Syndrome apart from other inherited dystrophies.

Associate Professor, Vitreo-Retina Surgeon. 10+ Years Experience

Senior Consultant Ophthalmologist & Eye Surgeon· 26+ yrs experience

Consultant Ophthalmologist & Eye Surgeon, MD, DO .16+ Years Experience
Because visual symptoms tend to appear so early in Alström Syndrome, the retinal care plan places real emphasis on prompt evaluation for stem cell therapy in eligible patients, paired with early low-vision strategies suited to a young child, all coordinated alongside the family’s existing care for the syndrome’s other systemic features.
“That’s a pattern specific to Alström Syndrome — it typically runs a cone-rod course, meaning central and colour vision are affected relatively early, unlike the more familiar rod-first pattern seen in classic retinitis pigmentosa.”
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They’re distinct conditions with some overlapping systemic features, but different genes are responsible and they follow different retinal patterns — Alström typically hits central vision earlier through a cone-rod pattern, while Bardet-Biedl usually follows the rod-first pattern seen in classic RP. Genetic testing tells them apart.”
“Alström Syndrome can affect hearing, heart function, and metabolism, so continued coordination with the relevant specialists managing those areas in Kenya remains important alongside the retinal evaluation we provide.”
“There’s no age that’s too young. Given how early visual symptoms tend to show up in this condition, an early baseline assessment gives us a clear reference point for measuring any future change.”
