Living with choroideremia
Practical recommendations for adapting to visual impairment and maintaining quality of life with choroideremia
Main symptoms
What happens to vision in choroideremia
Night blindness
Worsening vision in dim light and slow eye adaptation when moving from bright light into darkness
Tunnel vision
Gradual narrowing of peripheral (side) vision, leaving only a small area of central vision
Progressive course
Gradual vision loss over decades. The pace of change is strictly individual
Practical tips for living with CHM
Although the disease is progressive, the right habits help you adapt and maintain a high quality of life. Here are the main recommendations from ophthalmologists and people living with choroideremia:
Regular ophthalmic follow-up
Have a comprehensive eye examination at least once a year. This is necessary not only to monitor disease progression, but also to detect associated conditions in good time (for example, cataract) and adjust your rehabilitation plan.
Protect your blood vessels: quit smoking
Because choroideremia affects the vascular layer of the eye, smoking is especially harmful. Toxic substances reduce blood supply to the retina. Quitting smoking is a critically important step for preserving visual function.
Protection from sun and bright glare
Outdoors, always use sunglasses with maximum ultraviolet protection (UV400). This protects the retina from damage and reduces discomfort from glare, especially from bright reflected light off snow or water. Wraparound frames with category 3 or 4 lenses are a good choice — they reliably block light from the sides.
Useful tip: Do not take off your sunglasses immediately when entering a building — this helps your eyes adapt more smoothly to the change in lighting.
Good lighting at home and at work
Quality lighting significantly reduces visual strain. Try to place your workspace near a window, use directed light sources, and modern lighting systems so that no areas of the room remain poorly lit.
Using rehabilitation aids
Using a white cane is not a sign of helplessness, but a tool for independence and safety. It helps you navigate space and serves as an important signal to others. Vision rehabilitation specialists can help you choose the assistive devices you need and teach you to make the most effective use of your remaining vision.
Do not be afraid to ask for help
Being able to accept support is a sign of maturity and self-care. If you find it difficult to navigate at dusk, in crowds, or in unfamiliar settings, do not hesitate to rely on people close to you. This can reduce anxiety and make getting around safer.
Nutrition and supplements
Important information:
There is currently no clinical evidence that any nutraceutical can stop choroideremia progression. However, research confirms their role in supporting overall retinal health. Always consult your doctor before starting any supplements!
Recommended supplements (based on Choroideremia Research Foundation data)
Lutein (20 mg/day)
A natural pigment that acts as an “internal filter” for the macula (the central zone of the retina). Important: lutein is fat-soluble and is absorbed only together with lipids.
Food sources: spinach, kale, parsley, green peas, pumpkin, egg yolk, persimmon, corn. (For example, always add oil to a spinach salad).
Zeaxanthin (2 mg/day)
Another essential pigment for central vision. It has strong antioxidant properties and protects eye cells from stress.
Recommendation: Add more bright orange and yellow vegetables to your diet (sweet pepper, pumpkin, carrots).
N-acetylcysteine (NAC) (300 mg twice daily)
A powerful antioxidant that helps cells clear toxins and breakdown products.
Important: Johns Hopkins University is currently conducting clinical trials of NAC for retinal diseases. Take this supplement only after approval from your doctor!
Omega-3 fatty acids (DHA: 200 mg/day, EPA: 400 mg/day)
Docosahexaenoic acid (DHA) is an important structural component of retinal cells. Eicosapentaenoic acid (EPA) has anti-inflammatory effects and supports cell membrane integrity.
Food sources: cod liver, salmon, herring, omega-3 enriched chicken eggs.
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