Disclaimer: None of this should be taken as medical advice. Consult with your doctor.
A question was posted in the Choroideremia (CHM) Facebook group about supplements:
Hello to all my fellow group mates. Just wanted some input as to what vitamins or supplements you are taking to help with CHM. I have been taking the Bausch and Lomb preservision and would like to know if there is something better or something additional you would recommend. TIA
The research into vitamins and supplements for choroideremia is very limited. I have only been able to find one published research study that focused specifically on choroideremia.
Macular Pigment and Lutein Supplementation in Choroideremia
A small pilot study was published in 2001 by Jacque Duncan (and others). In this study, 7 choroideremia patients took 20 mg of Lutein for 6 months to see if it had any effect on their vision or macular pigmentation. Lutein supplementation has been tried in other eye diseases, so choroideremia was a natural disease to study.
Macular pigment is the yellow pigment of the retina which is primarily composed of lutein, meso-zeaxanthin, and zeaxanthin. The primary “function” of this pigmentation is to filter out some blue light and provide some antioxidant protection to the retina. Basically it is your eye’s own internal version of sunglasses.
The baseline levels of macular pigmentation were the same in choroideremia patients and control subjects.
The density of macular pigmentation increased in choroideremia patients after taking lutein for 6 months
The level of lutein in choroideremia patients also increased
No change in patients' vision was observed (neither central vision or dark-adapted function)
While this study was small the results are promising. It is nice to see that taking lutein could increase the level of macular pigmentation in choroideremia patients. I wouldn’t expect to see any immediate change in vision, but the increased protection could be beneficial in the long term. I would like to see this studied in a larger group and followed over a longer period of time.
There are other vitamins and supplements that help with general eye health and some other related eye diseases like Retinitis Pigmentosa. The Choroideremia Research Foundation has a list of commonly recommended supplements which includes Lutein, Omega-3 (Fish Oil), Zeaxanthin, and N-Acetyl Cysteine (NAC). None of these have been proven to help preserve vision in choroideremia patients, but they are worth consulting with your doctor about.