A few weeks ago, the Foundation’s chief research officer, Dr. Steve Rose, authored a post about acupuncture that generated significant interest from readers at Eye on the Cure and on FFB’s Facebook page. The impetus for his post was a feasibility study at Johns Hopkins University, in which Dr. Ava Bittner, O.D., Ph.D., found that eight of 12 people treated with acupuncture had, as Dr. Bittner reported, “significant vision improvements in night vision, dark adaptation and/or visual field.”
These are early findings, and acupuncture deserves much more research in order to know whether it is an efficacious and useful treatment for retinitis pigmentosa. Based on some patient experiences, including mine, there could be potential benefits from acupuncture.
Although I did not participate in Dr. Bittner’s study this past August and September, I underwent a 10-session acupuncture protocol for retinitis pigmentosa. I have Usher syndrome 2 and was only seeing shadows. I went to John Hopkins for acupuncture administered by a licensed acupuncturist trained for this specific protocol. During the sessions, about 40 needles were placed on various parts of my body, including toes, calves, knees, stomach, hands, ear, neck and scalp. Six additional needles were placed around each eye, but none directly on my eyes. The wiring providing the micro current was attached to the needles around both eyes. Then I lay there listening to soft music for 30 minutes. Nothing was painful. The micro current just felt like a gentle massage.
When at home, sometime after the third session, I suddenly could see the sink against the white counter top in my kitchen. I asked myself, “Could I see this before?” I was uncertain, as, over the years, I had stopped trying to use my vision. As sessions passed, these types of occurrences happened over and over again.
I also noticed I had the ability to see more contrast, and I perceived that my night vision had improved. For the first time in years, while traveling in a car, I could see the red taillights of cars ahead of our car and the headlights of oncoming cars. This is my opinion, of course, but I became certain that this was no placebo effect when, also at night, I saw the signs on the highway as our car approached them. I could not see that the signs were green or read them. Finally, although I hadn’t been looking for them, I saw the glint from the glasses on my husband’s face.
Living in Washington, D.C., I rely on the Metro, which is a very dark place with low lights. I travel on it with my guide dog, Finnegan. One day, as I was getting ready to get on the escalator, I saw the red light at the base of the escalator letting me know to stop as the escalator was going in the wrong direction. I could also see the green lights, although they appeared more white, letting me know I was heading in the right direction. I have not been able to see these lights for at least four years.
I still cannot see faces, and I can see only the color red. However, when I set the table for dinner, I can now see the placemats, plates and napkins, although I cannot see the details. Another reason I don’t consider this a placebo effect is that people who know me have noticed slight improvements in my vision. It’s important to note that my results have not been measured.
The Foundation’s work is grounded in rigorous scientific study, and as a member of its board, I know FFB cannot endorse acupuncture treatments until more scientific evidence is available.
Because of my experience, however, I ask everyone to be open, and not judgmental, when it comes to acupuncture. Eventually, the science will speak out. Dr. Bittner will soon launch another study taking a much more detailed look at acupuncture’s effects on retinitis pigmentosa. This is what we need — the science, the data, to discover all we can about the acupuncture process. Will it keep the cellular function healthy until there is a treatment? That is what I am hoping.
My caution to anyone considering acupuncture is not to run off to just any acupuncturist. In November, Dr. Bittner’s study was published in the journal Clinical and Experimental Optometry. This is a very defined, specific protocol. The risk factors are low, but I do advise you to go over them with your licensed acupuncturist.
Pictured, above: Moira Shea at home, with her guide dog, Finnegan.