Listen to this page using ReadSpeaker

An FFB Board Member’s Perspective on Her Experience with Acupuncture

Moira Shea, an FFB board member who says she has benefited from acupuncture therapy, at home with her guide dog, Finnegan.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.


24 Responses to 'An FFB Board Member’s Perspective on Her Experience with Acupuncture'

  1. I am very pleased to hear that Mrs. Shea had a positive response to the acupuncture protocol I created for this acupuncture study. Dr. Bittner and I are very much looking forward to gathering more information during our next study in 2014.

    Acupuncture is certainly not a cure for RP, but it may be able to recover some lost vision for some and slow the progression for others. We have seen anecdotal evidence clinically over the last 16 years with over 600 RP/RCD/Usher’s cases.

    We are very grateful to Dr. Steve Rose for writing about the work we are doing. We strongly agree with the FFB position that people with RP should not run out and get acupuncture treatment. Some may obtain a copy of the study and want their acupuncturists to administer this method of acupunture treatment without being trained. We do not recommend this course of action. Administering this protocol without the proper education/training may result in harm to the recipient.

    Thanks again for Mrs. Shea for sharing her experience and supporting our work.

    • Zeeshan says:

      Since there is talk about accupuncture going on, has anyone heard of Dr. Wei Dong Yu out in Vancouver, Canada? There’s videos of him on youtube,and even BBB has given them a good rating. I was going to go there, but wasn’t sure. Would anyone happen to know about him?

  2. Karen Morgan says:

    Can you tell me where in the Boston area that this procedure might be done? Thank you.

  3. kelly says:

    I have this same eye condition how do I take part in this
    Kelly dorsey

  4. Mats Sexton says:

    I am an acupuncturist colleague of Andy Rosenfarb who also specializes in treating degenerative eye diseases. Most of my clients have macular degeneration but I have also treated cases of RP.
    Andy is the “Guru” of RP and I am so thankful for his research in this area as it is truly ground breaking. He makes an important point that acupuncture is not a cure for this disease but it may be the best thing until there is. What we seek to do with acupuncture, and more specifically Chinese medicine (acupuncture, herbs, nutrition, bodywork, exercise) is assess and treat the whole person–physical and emotional). How are your emotions and stress affecting you and your eyes? Toxins? Foods? I often say that eye problems are not really eye problems, but rather a manifestation of the whole. Unless the whole person is assessed and treated, how can a comprehensive change be achieved?
    I’m always disappointed when people dismiss acupuncture without first trying to understand it. It is a 3,000 year old and very literate medicine. It is no pseudo-placebo-science. I have had too many clinical experiences proving the opposite. Just ask my once-skeptical client who hadn’t driven since March, but was able to drive to his appointment last week. Or the lady who saw 4 lines lower on the eye chart in 5 days. Or the clients who have seen me periodically for 10 years and have better vision now than in 2003.
    RP and Stargardt’s can be more challenging to treat than Mac degen due to their congenital nature. It takes commitment and persistence. If you have RP, consider a consultation with Andy. You don’t have to lose sight before there’s a cure!
    Mats Sexton, L.Ac.

  5. Eye on the Cure says:

    We appreciate our readers sharing their personal experiences and perspectives about acupuncture for retinitis pigmentosa. We look forward to following Dr. Bittner’s forthcoming research and gaining necessary additional clinical trial data around this approach.

  6. Aaron Balver says:

    This is great! Thank you! Would love to gain some peripheral & night vision back someday. Just found out today I have RP. I’m 28yrs old & live in the Los Angeles area.

  7. Great! You have come across retinitis pigmentosa with the acupuncture. For to deal with depression i think acupuncture may be the best treatment therapy.

  8. Vincent Forte says:

    Is there an Andy Rosenfarb type facility in the Westchester County, New York area.

  9. I have been receiving inquiries from people with RP about acupunturist in various cities who can adminster mt RP acupuncture protocol. Currently, I have NOT trained anyone in the JHU acupunture research protocol, and we have not authorized anyone to adminster it clincally.

    I will be training/certifying acupuncturists over the next year or so. The reason is that the acu-points listed in the research paper are not traditional acupunture points, we listed acupoints in closest proximity. We did not clarify the specific locations and needling methods in the study report. These are alternate locations that I have found which seem to better benefit vision for RP patients.

    Acupuncturists interested in adminstering this protocol must learn these alternate acupoint locations in order to correctly adminster the protocol and get results.

    Again, our research team does not recommend acupuncturists adminstering this without the proper training. We will let people know when are looking for participants for the next study in 2014.

  10. Juanita Rodriguez says:

    My son (23 yrs old) has RP and therefore is intersted in finding out more about the upcoming study as well as when acupuncturists in Arizona get certified to perform these services.

  11. Shaini says:

    I’m sooo happy to hear that you are seeing improvements!!! I actually went to an ancupuncture centre in ocotober, where the doctor told me ancupuncture will help, i went to a few session, and had to stop because of fianncial issues, but will soon restart them again! Good luck with everything!

  12. John Boel Jr says:

    It is nice to read this post. Not much scientific Retinitis Pigmentosa research have been done regarding the effect of acupuncture on this condition. A University in Austria have done some though. An extract of the findings can be seen here.
    http://acunova.dk/1585-2/?lang=en

  13. Tim says:

    Was wondering if any more test groups were needed yet, I don’t have rp but am trying to keep in touch with the latest research for someone close to me. What would it take to get an acupuncturist in the Northern California area trained in this procedure?
    Regards,
    Tim Keith
    Tim@leafandvine.com

  14. Nouman says:

    Is there a facility like Andy Rosenfarb in Sweden?

  15. Madhu says:

    My brother having this same problem and he lives in India. Can some suggest if any such treatment available there in India? And how much costs?

    • EyeOnTheCure says:

      Madhu, thank you for your message. Unfortunately, we can only speak about research for retinal degenerative diseases that affect the retina in the eye. Your doctors and other eye specialists will be best suited to answer your questions about what treatments are available for your own condition.

      You may want to visit the website of the National Eye Institute (http://www.nei.nih.gov/) or reach out to someone at the institute – they may be able to point you in the correct direction on other resources or organizations who specialize in your condition.

      We wish you all the best as you try to find out more.

  16. Sue says:

    Dr. Rosenfarb, how can we stay informed about the 2014 study and the availability of trained acupuncturists in our regions?

    Thanks!

    • I do train and certify acupunturists in this method to treat RP. If you know of an acupuncturists who may be interested, can have them contact me at acupunkk@aol.com. I currenty have acupuncturists trained in Australia, Israel and a few others around the US. Again, I recommend seeing someone who has this training or those acupunturists with a significant amount of experince in treating RP. Results should be evidnt within the forst 10 treatments.

      As for the next step with research, we received a grant for the NIH to do a second (and larger) study starting in Spring 2014. If you would like to receive information and updates in our AcuVison Newsletter, feel free to sign up at http://www.acuvisiontherapy.com

  17. amit says:

    my father also having this same disease. he is getting some progress by doing everyday yoga.

  18. Darnel Bryan says:

    I want to know about this particular treatment in the Maryland area.

  19. Jack C Crofoot, Jr. retired Anesthetist says:

    Moira M. Shea, This is an orginization that “Scientifically” keeps the RP community informed. It has been a reliable source of information until you were allowed to post your “Testimonial”(Completely Unscientific) about Rosenfarb and Bittner Study. At J-H. You do a disservice to the RP community in general. It just shows that in quoting from Rosenfarb/Bittner Study, you never actually read it or did not understand the scientific implications. It was written up like a 8th grade science project. It did not use scientific methodology. It was not double Blind. I could go on, but suffice to say that your testimonial was an obvious attempt to undermine Dr. Rose’s Scientific look at Acupuncture. You were only given a voice by way of Board Membership, and not because of scientific knowledge base. -Jack,retired Anesthetist

  20. Vladimir says:

    I have a daughter with Stargardt and I was contacted with turkish Dr. Feratli, who declared that already treated by electro acupuncture many patiens with macula degenerations, including RP and Stargard Disease. He prove this treatment on his site:
    http://stargardtdisease.com/contact-information/
    It’s a right of evryone to deside – to beleave him or not, but I would like to give my child a chance.
    This question addressed to Dr. Andy Rosenfarb.
    The time is going and for all the wourld is not enough doctors like you. What you think, can somebody else have results that you have or better?

Leave a Reply

Your email address will not be published. Required fields are marked *

*