Deep inside almost every cell in the body sit tiny hair-like structures called cilia, and when the genes controlling them malfunction, several organs can be affected at once — that is the foundation of a group of conditions known as ciliopathies, and Bardet-Biedl Syndrome (BBS) belongs to that group. Vision loss is one of its most consistent features, but it sits alongside a broader set of systemic findings that Zambian families are typically already managing with local physicians before they reach out to us.
Because BBS touches so much of the body, our retinal evaluation is deliberately narrow: we review existing records beforehand to understand the wider systemic picture, then dedicate the in-person visit specifically to the eye testing and care planning that needs equipment most local clinics simply do not carry.

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
“No — our evaluation and any retinal treatment stay focused on the eye component specifically. The other features of BBS, including weight management and kidney function, need to remain under the care of the relevant specialists, ideally with information shared between our team and theirs.”
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In many cases, yes — central vision tends to be affected somewhat earlier in BBS compared with non-syndromic RP, which is a major reason we generally recommend closer monitoring intervals specifically for BBS patients.”
” Yes. Getting a baseline ERG and OCT done before any symptoms appear makes it far easier to detect and measure change at future visits, and lets us plan low-vision support proactively rather than reacting after the fact.”
“The fuller medical picture helps our team understand the whole context of the syndrome, even though the in-person visit itself stays focused specifically on retinal evaluation and care.”
