What Is the Treatment for Retinitis Pigmentosa?

By Frank J. Weinstock, MD
Edited by Maureen A. Duffy, M.S., CVRT

As of now, there is no specific treatment for retinitis pigmentosa. In the past, there were reports that a supplement of 15,000 I.U. of Vitamin A and possibly fish oil supplements might be of some benefit.

However, in November 2012, The Foundation Fighting Blindness updated its information on the combined treatment regimen of vitamin A palmitate (which is different from Vitamin A), oily fish (DHA), and lutein, which may slow vision loss in people with retinitis pigmentosa and Usher Syndrome types 2 and 3. The new information replaces the Vitamin A Packet information that was provided previously by the Foundation.

The treatment regimen is based on three peer-reviewed, Foundation-funded clinical studies conducted by Dr. Eliot Berson and his colleagues at the Massachusetts Eye and Ear Infirmary. In Omega-3 Rich Diet Combined with Vitamin A Slows Visual Acuity Decline in Patients with RP, Dr. Berson reported that the combined regimen may provide up to 20 additional years of useful vision for people with typical forms of RP.

The new information includes:

  • Research on lutein supplementation for slowing loss of mid-peripheral visual field
  • Research on oily fish consumption, or DHA supplementation, for slowing loss of visual acuity
  • Diseases for which vitamin A palmitate supplementation could be harmful
  • Please note: Before considering these treatments, individuals should check with their primary care physicians and their ophthalmologists to determine if there are any safety concerns to consider. Mega-doses of vitamin A may be harmful and are not recommended.

The Critical Importance of Diagnosis

Low Vision Options

It is important that your eye doctor makes an accurate diagnosis so that you and your family can find out about the status of the disease, what your options are, and what low vision treatments (in more advanced disease) and even clinical trials might be available to allow maximization of your vision.

Low vision help may be provided in eye specialists' offices, and there is a network of low vision doctors and services that may be very helpful in coping with RP. You will want to discuss your options with your low vision specialist.

For example, there are visual field-expanding glasses that use prisms. These have been developed for people with reduced peripheral vision. These special prism glasses can be made to help you become more aware of your missing visual fields, making navigation and reading easier. They do not restore "normal" vision, but they have proven helpful for many everyday activities and for specific mobility and travel functions. You may require specialized training from a certified low vision therapist to be able to use these glasses safely and productively.

Reverse telescopes can also be helpful if your field of vision is less than 10 degrees. These telescopes reduce the image to fit within your field of vision and require a visual acuity of 20/80 or better. You will need training in orientation and mobility to be able to use these devices properly.

You can learn more about low vision options at What Are Low Vision Optical Devices?, Helpful Non-Optical Devices for Low Vision, and Electronic Magnifiers and Magnifying Systems.

Cataracts and Cataract Surgery

Individuals with RP may also develop cataracts. Cataracts may be removed, as in other persons with cataracts, usually with the use of an intraocular lens. Read VisionAware Peer Advisor Audrey Demmitt's first-hand account of her cataract surgery with retinitis pigmentosa at Cataract Surgery Can Be Beneficial for People with Retinitis Pigmentosa: My Experience on the Visually Impaired: Now What? blog.

Is There a Cure for Retinitis Pigmentosa?

Although there is not yet a cure, there is much retinitis pigmentosa research being carried out by universities and others in the United States and around the world.

Portions of this article were published originally at http://www.medicinenet.com/retinitis_pigmentosa/article.htm

Personal Stories

  • Amy Bovaird: Mobility Matters
    As a person with retinitis pigmentosa, "Mobility matters. It allows me to join the rest of society, follow my interests and passion, and reconnect with my love for traveling. I don't have to stay at home fearing the dark anymore. I can live independently."

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