In my continued pursuit of unlikely cures for the presumed incurable retinitis pigmentosa I stumbled onto some articles selling supplements and natural “remedies” for the condition. Unlike acupuncture, homeopathy and other alt-med modalities, if a patient takes a supplement, they put something into their bodies that may cause something to happen. Also, There exists a sizable amount of data published by very real scientists on how some vitamins can actually slow the progress of the disease which makes dismissing the entire modality impossible.
As this column almost always reports on alt-med modalities that do not work, I’ll start this article with the solid bit of positive data in this area. At Massachusetts Eye and Ear, one of the world’s best hospitals and research centers regarding (as you may have guessed) eyes and ears. Back in 1987, I had an appointment there with Dr. Eliot Berson who is also the Principal Investigator on a study of about 600 people with RP over a fairly long period of time. The study, published in 1998, found that people with retinitis pigmentosa who take 15,000 units of vitamin A daily will experience a slower rate of degeneration of their retinas. While not a cure for RP, the data shows that one can continue to have usable vision for much longer if the supplement their diet with this extra vitamin.
While Dr. Berson’s work shows great promise, many alt-med sites that offer no real demonstration of efficacy for their supplement include links to Berson’s work as, if vitamin A, a supplement, can do great things, doesn’t it follow that other supplements will work as well? The answer is, of course, “no” but our friend Google will show you thousands of sites prepared to sell you something that someone, without proof, claims will cure your RP.
The most common claim for how a supplement will help people with RP is that the substance is said and maybe even shown to lower interocular pressure – the pressure the fluids in one’s eyes against the eye walls. Glaucoma, a major cause of blindness, is primarily a problem in which one’s interocular pressure gets too high; increased interocular pressure is a symptom of RP but it doesn’t cause the degeneration of the retina and reliving it for RP patients does nothing to improve vision. Many things, including marijuana, reduces this pressure but it only seems to benefit the glaucoma patients and, among this population, reduction in pressure doesn’t cure the problem but, rather, makes the patient more comfortable which is a good goal if the patients understand what to expect.
It seems that, if one searches far and hard enough, they will find that dozens of different supplements have claims to do something good for people with RP. These include fish oil, omega 3 fatty acids, virtual all vitamins and all sorts of other substances. Unfortunately, there is little or no published evidence that any of these things actually work. Even worse, is that vitamin E has been shown in real clinical trials to make RP worse – a fact that is rarely stated clearly in the retinitis pigmentosa section on supplement sales sites.
Some of the seemingly bogus RP cures claim that their supplement will help increase the visual fields of people with RP. The major symptom of Retinitis pigmentosa is the gradual deterioration of the retina, slowly narrowing the visual fields, first to tunnel vision and then to no vision at all. There is no evidence that anything known can reverse this process but these supplement sales sites continue to claim that their products can help.
The other major point claimed by the supplement vendors is that their product can increase one’s immunity. I’m not sure if this claim is true or not and there is scant evidence to support the claims but, even if they do strengthen the immune system, there is no evidence that this helps people with retinitis pigmentosa.
So, if you have RP or know someone who does, encourage them to read about vitamin A as described in Berson’s work and to avoid all other supplements that make great claims with little or no actual evidence.
When I started at 21st Floor, I said that I would start by writing about retinitis pigmentosa and then move onto other diseases that lead to major disability and/or death. I’m working on a piece about very scientific sounding claims made about stem cell therapies that, in fact, provide no help and are enormously expensive and will do the articles as a series talking about how this fraud is being perpetrated on a lot of desperate people.
Lastly, on January 24, 2011, the first real embryonic stem cell therapy for retinal disorders in the US was conclusively shown to restore vision in at least two people. I find this really exciting but, as the sample size is minuscule, I won’t be holding my breath for a cure any time too soon.