Does any one else have an eye disease called Retinitis pigmentosa (RP) ?

Question

I have (RP). I found out when i was about 7 years old. I was wondering if anyone else out there has it too. I wanted to see if they are going through what i am going through too.

Answer 1

Here is part of my file on Retinitis Pigmentosa...I hope this helps...

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"High doses (75,000 IU daily) of vitamin A can slow the loss of remaining eyesight by about 20 percent per year, according to Dr. Eliot Berson, professor of opthamology at Harvard Medical School." p. 267 under Retinitis Pigmentosa in "Prescription for Nutritional Healing" by James F. Balch, M.D. & Phyllis A. Balch, C.N.C.

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http://www.usher-europe.org/usher/eng_web/RsofDHA.html

Studies have suggested that DHA levels are lower among patients with retinitis pigmentosa than other individuals in control groups. Differences in serum levels were posted lower in subjects with retinitis pigmentosa by 10-15%. A correlation is reached regarding the concentration of DHA and its ability to enhance the function of the cones and rods within the retina. Currently hypothesized, is a metabolic defect of synthesizing DHA from sources of ALA. Further studies using DHA supplementation as an intervention have reported improvements to neurological functions, as well as the retinal response of some RP patients. The necessity of DHA to support the normal neurological development response is further correlated through studies completed during early infancy.

http://www.usher-europe.org/usher/eng_web/RsofDHA.html

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Amazing Grace: Autobiography of a Survivor By Grace Halloran Grace Halloran was diagnosed with retinitis pigmentosa and macular degeneration. This is the story of her path of healing.

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http://www.visualhealing.com/

Integrated Visual Healing by Grace Halloran, Ph.D.

A Self-Help Therapy Program For Macular Degeneration, Retinitis Pigmentosa, Glaucoma and Other Eye Disorders

Grace Halloran, Ph.D., Director of the
Integrated Visual Healing Program

In the spring of 1971, I was told that I would go blind. The doctor that identified the genetic defect declared he hoped going blind would have a maturing affect. The news that I was legally blind at that time, aged me way beyond my twenty five years. The diagnosis of retinitis pigmentosa, complicated by macular degeneration, usually affecting older people, aged me even further. I was told that I had the eyes of someone in their 80's. Both conditions typically steals precious sight. Conventional medicine had nothing, not even hope to offer.

Since then and for over twenty-five years, I have been on a collision course with conventional medical beliefs. Repeatedly told that there was nothing to do for my own impending blindness, or for the predicted loss of my children's sight, I refused to give up. Since conventional medicine had nothing to offer, I turned to the alternative health community. My perceived curse turned to a gift. A new world of hope and help opened when I entered the alternative health care field. In 1979, I earned my Ph.D. in Holistic Health Science from Columbia Pacific University for my work in alternative eye health care.

Contrary to conventional medical beliefs, my sight improved. Because so many people are in need, and due to my own success, I've had the privilege to teach these methods all over the world.

The techniques and methods I found helpful come from many different disciplines. Nutrition was my first introduction into alternative medicine, and that opened the doors to so many more. Oriental medicine, color therapy, vision exercises, stress management, and micro-current stimulation to increase healing were all tools incorporated within the Integrated Visual Healing program. Every individual, from four to ninety-four can learn to improve eye health. My program provides the training, education and tools, so that those affected with these chronic disorders are able to impact their own eye health on a long term, on-going basis.

My dream has always been to develop an effective therapy program that could be prescribed when someone is first diagnosed with serious eye disorders, no matter what the age. With the help of an open minded ophthalmologist, I put the IVH program to the test of objective medical evaluation. The results have been dramatic and rewarding. The initial results were published in the April 1998 Townsend Newsletter for Doctors and Patients.

My path may not have been consciously chosen, yet it is one that I treasure deeply. My vision is not perfect, and the therapy involved takes persistence. However, the reward is seeing my children's and grandchildren's beautiful faces. There is always hope. Note . . . For more information, read Amazing Grace - Autobiography of A Survivor, by Grace Halloran.

http://www.visualhealing.com/

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Answer 2

Fortunately not me, wish you wouldn´t.

Answer 3

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Answer 4

Retinitis pigmentosa (RP) is the name given to a group of inherited eye diseases that affect the retina. Retinitis pigmentosa causes the degeneration of photoreceptor cells in the retina. Photoreceptor cells capture and process light helping us to see. As these cells degenerate and die, patients experience progressive vision loss.

There are types of photoreceptor cells: rod cells and cone cells. Rod cells are concentrated along the outer perimeter of the retina. Rod cells help us to see images that come into our peripheral or side vision. They also help us to see in dark and dimly lit environments. Cone cells are concentrated in the macula, the center of the retina, and allow us to see fine visual detail in the center of our vision. Cone cells also allow us to perceive color. Together, rods and cones are the cells responsible for converting light into electrical impulses that are transmitted to the brain where “seeing” actually occurs.

Symptoms
The most common feature of all forms of Retinitis Pigmentosa is a gradual degeneration of the rods and cones. Most forms of RP first cause the degeneration of rod cells. These forms of Retinitis pigmentosa, sometimes called rod-cone dystrophy, usually begin with night blindness. Night blindness is somewhat like the experience normally sighted individuals encounter when entering a dark movie theatre on a bright, sunny day. However, patients with Retinitis pigmentosa cannot adjust well to dark and dimly lit environments.

As the disease progresses and more rod cells degenerate, patients lose their peripheral vision. Patients with Retinitis Pigmentosa often experience a ring of vision loss in their mid-periphery with small islands of vision in their very far periphery. Others report the sensation of tunnel vision, as though they see the world through a straw. Many patients with Retinitis Pigmentosa retain a small degree of central vision throughout their life.

Normal vision
As seen by a person with retinitis pigmentosa

Other forms of Retinitis Pigmentosa, sometimes called cone-rod dystrophy, first affect central vision. Patients first experience a loss of central vision that cannot be corrected with glasses or contact lenses. With the loss of cone cells also comes disturbances in color perception. As the disease progresses, rod cells degenerate causing night blindness and peripheral vision.

Symptoms of Retinitis Pigmentosa are most often recognized in children, adolescents and young adults, with progression of the disease continuing throughout the individual’s life. The pattern and degree of visual loss are variable.

Genetics of RP
Within the nucleus of every human cell reside a host of genes. Genes are the fundamental building blocks of life. Inherited from our parents, genes carry family traits like eye and hair color, the shape of our face and even diseases like Retinitis Pigmentosa.

Genes are like computer programs containing sets of coded instructions. Each gene instructs the cell to create a specialized protein that performs a specific task for the cell. In retinal cells, some genes encode proteins that allow the cell to process light. Other genes encode proteins that uptake nutrients and eliminate waste from the cell. Still other genes encode proteins that form the cell walls and other structures within the cell.

Sometimes, the coded instructions within a gene become altered. These alterations, known as mutations, can confer a benefit, allowing the organism to better adapt to its environment. However, mutations can also interfere with the proper encoding of a protein. The resultant protein cannot perform its job within the cell, thereby hampering the cell’s well being and leading to disease.

Retinal cells are among the most specialized cells in the human body and depend on a number of unique genes to create vision. A disease-causing mutation in any one of these genes can lead to vision loss. To date, Foundation researchers have discovered over 100 genes that can contain mutations leading to Retinitis Pigmentosa.

Retinitis Pigmentosa can be passed to succeeding generations by one of three genetic inheritance patterns—autosomal dominant, autosomal recessive, or X-linked inheritance.

Each type of inheritance causes a different pattern of affected and unaffected family members. For example, in families with autosomal recessive Retinitis Pigmentosa, unaffected parents can have both affected and unaffected children. In recessive Retinitis Pigmentosa, there is often no prior family history. In families with the autosomal dominant RP, an affected parent can have both affected and unaffected children. In families with the X-linked type, only males are affected, while females carry the genetic trait but do not experience serious vision loss. It is very important to remember that because RP is an inherited disorder, it can potentially affect another member of the family. If one member of a family is diagnosed with a hereditary retinal degeneration, it is strongly advised that all members of that family contact an ophthalmologist.

Related diseases
Other inherited diseases share some of the clinical symptoms of RP. Some of these conditions are complicated by other symptoms besides loss of vision. The most common of these is Usher syndrome, which causes both hearing and vision loss. Other rare syndromes that researchers are studying with funding from The Foundation Fighting Blindness include Bardet-Biedl (Laurence-Moon) syndrome, Best disease, choroideremia, gyrate-atrophy, Leber congenital amaurosis, and Stargardt disease.

RP and related diseases are rare and difficult to accurately diagnose. Only a specialist can properly distinguish between the subtle clinical features of these diseases. Therefore, it is important that patients who are symptomatic see an ophthalmologist who specializes in retinal degenerative diseases.

Answer 5

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