WHAT IS RETINITIS PIGMENTOSA?
The term retinitis pigmentosa (RP) was coined by Frans Cornelis Donders, a Dutch pioneer of vision and psychological sciences, in the middle of the 19th century. He used these words to describe the distinctive appearance of the retinas of a group of patients suffering from vision loss. The term “retinitis”, meaning inflammation of the retina, is somewhat misleading as RP is not an inflammation, but an inherited, slow-paced degeneration of the retina. The term “pigmentosa” refers to the characteristic pigment clumping seen on examination of the retina in many forms of RP.
Today, RP refers to a large group of inherited degenerative diseases of the retina. It has been found to occur in men and women of all race and ethnicity. It even occurs naturally in some animals. RP is a relatively rare eye disorder. Reference: www.ffb.ca
There are two main cell types within the retina: rods and cones. Cone cells are present throughout the retina. The center of the retina (the macula) has the greatest amount of cones, and helps with central (reading) vision and color vision. Rod cells are present throughout the retina, except for the very center (fovea). Rods help with night vision and side vision. In RP, the rod cells and eventually the cone cells stop working, causing vision loss. Reference: www.kellogg.umich.edu
Additional information about Retinitis Pigmentosa can be found here:
The first signs of Retinitis Pigmentosa usually occur in early childhood, when both eyes typically are affected. Night vision can be poor, and the field of vision may begin to narrow.
When RP first starts to appear, the light-sensing cells that are responsible for vision in dim light (rods) gradually deteriorate and seeing at night becomes more difficult.
During later stages of Retinitis Pigmentosa, only a small area of central vision remains, along with slight peripheral vision. Reference: www.allaboutvision.com
Additional information about RP symptoms can be found here:
Retinitis Pigmentosa is caused by defects in certain genes that result in damage to the retina. RP can be inherited in 3 ways:
- An autosomal (non-sex-related) dominant chromosome (50% chance of inheritance)
- An autosomal recessive chromosome (often a low chance of inheritance)
- An X-linked (female-linked) chromosome, where inheritance often is demonstrated only in males and is passed through unaffected mothers, known as carriers
Click here for explanation of Inheritance Patterns
Additional information about RP genetics can be found here:
While there are no therapies today to cure RP, there are two important options for helping individuals with the disease. The first is to make the most of existing vision by using low vision therapy and aids. Second, it may be possible to slow further vision loss with the use of antioxidant vitamins. Meanwhile, research is ongoing. Scientists have effectively treated some animals with RP. Several treatment trials in humans are expected to begin in the near future.
Despite the lack of treatment for RP, general eye checkups are important because people with RP are still at risk for other kinds of eye problems that may affect anyone in the general population. Some may be treatable with surgery or medications. Regular visits to an RP specialist can also make you aware of current advances as we learn more about RP and treatments that may help you. Reference:www.kellogg.umich.edu
Additional information about Aids for low vision can be found here:
For information about Retina Implants please refer to the following links:
Many research groups are working to develop treatments and cures for RP. Research work is carried out in different directions:
- GENE IDENTIFICATION RESEARCH
There are over 55 RP-causing genes known. Fifty more genes cause other diseases with features similar to RP. More genes are being discovered all the time. Participating in RP research may help researchers find new RP-causing genes or develop a better understanding of this disease. This information can be used to produce better treatments and ultimately a cure for RP. Studies of many members of the same family may also be useful to identify RP-causing genes. Sometimes, if we know the mutation causing your RP, we can give you more information about disease progression or risks to family members. Reference: www.kellogg.umich.edu.
- RESEARCH FOR NEW THERAPIES
Scientists believe that researching the genetic causes of RP will help in the development of future therapies. Research constantly produces new information, so it is difficult to report here on the “latest” findings.The best way to stay up to date is to ask your RP specialist about current research and clinical trials at your next visit. Reference: www.kellogg.umich.edu.
You can also find reliable information here:
- STEM CELL THERAPY
Information regarding the stem cell therapy research can be found
Stem Cell Clinical Trial Table
Journal articles related to the latest Stem Cell research:
Stem cells in retinal regeneration: past, present and future
Developing cellular therapies for retinal degenerative diseases
Recent Advances of Stem Cell Therapy for Retinitis Pigmentosa
Recent Advances towards the Clinical Application of Stem Cells for Retinal Degeneration
- VITAMIN TREATMENT
Journal articles related to the latest Vitamin treatment research can be found here:
The evidence for efficacy of omega-3 fatty acids in preventing or slowing the progression of retinitis pigmentosa: a systematic review .
Nutritional one-two punch may slow retinitis pigmentosa
HOW TO LIVE WITH RP
It may be very hard to deal with a diagnosis of RP. Many people have never heard of the disease and are unsure of how RP will affect them. It is important to realize that most of the time the disease progresses slowly. For the most part, you will not have to learn new skills overnight. People who have RP lead successful and full lives. There are people to help you along the way. Many kinds of services are available if and when they are needed.
It is perfectly natural for someone with vision loss to feel anxious, fearful, angry, or unhappy. If your child has RP, it is also natural to have feelings of uncertainty, anxiety, and fear over what the future may hold for him or her. It is critical that you discuss these feelings with your medical team. Support groups can also be very helpful. Reference: www.kellogg.umich.edu
Below are the links to organizations that can provide information about RP and about living with low vision.
Booklets about Retinitis Pigmentosa:
Guide to Retinitis Pigmentosa and other related diseases
Understanding Retinitis Pigmentosa
Below are the links to the organizations providing disability care and support services to people with impaired vision.
Facebook Support Groups
Support groups bring together people facing similar issues. Members of support groups often share experiences and advice. It can be helpful just getting to talk with other people who are in the same boat.
Search for the following closed groups in Facebook:
- Retinitis Pigmentosa
- Retinitis Pigmentosa Support Group (The RP Family)
- Retina Australia – Youths
- Retinitis Pigmentosa Update.
- Spouses of People with RP
- C2orf71 Retinal Degeneration Group
If you are aware of additional groups that would be of benefit to Retina Australia WA members and other individuals affected by RP please forward the suggestions to our office. Alternatively if you have any queries or require assistance finding this groups please feel free to contact the office on +61 8 9388 1488 or email to i [email protected] .
Osborne Park WA 6917
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- What Is the Treatment for Retinitis Pigmentosa?
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.
- You can track ongoing research and news at the retinitis pigmentosa category on the VisionAware blog.
- Follow the VisionAware blog to keep up with the latest news in all areas of blindness, low vision, and independent living.
- Ask your eye doctor about low vision services and other types of vision rehabilitation services that can help you with everyday living .
- The VisionAware Getting Started Kit provides more ideas to help you live well with low vision.
- You can also read personal stories about people who are coping successfully and living well with a variety of eye diseases and disorders, including retinitis pigmentosa.
- Sign up with VisionAware to receive free weekly email alerts to track our blogs and receive helpful information and tips for everyday living with vision loss.
Portions of this article were published originally at http://www.medicinenet.com/retinitis_pigmentosa/article.htm
- Next: Resources for More Information About Retinitis Pigmentosa
- Previous: How Is Retinitis Pigmentosa Diagnosed?
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- Overview of Low Vision Devices
- What Are Low Vision Optical Devices?
- Helpful Non-Optical Devices for Low Vision
- Orientation and Mobility Skills
- 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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What Is the Treatment for Retinitis Pigmentosa?
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