Retinitis Pigmentosa Overview

     Retinitis pigmentosa is a group of eye diseases caused by the deterioration of the retina due to a lack of the enzyme to prevent the deterioration of normal pigment, so that the retina atrophies and essentially deteriorates.  Due to this, the person with RP will see less and less peripherally.  Top, bottom and side to side, so that there is tunnel vision, and very often eventually no vision because the macular deteriorates as well.  When I walk into an unfamiliar room, I have to look all around, moving my head to see the room.  New places are the hardest to maneuver.
     It is really common with RP to be in denial because most of one's life is spent with at least partial eyesight, so the person with RP may feel or identify with being sighted because they do not know how truly sighted people see.  Plus, someone who is legally blind may be very visual and enjoy seeing, but the squinting, straining and trying to see can become wearisome.  Often someone with RP will go totally blind.
     Once someone with RP is diagnosed as legally blind and finds him or herself with less and less freedom and finds the world closing in and becoming smaller, it can become worrisome and frightening.  Since it is a rare disease, it is hard to find others outside your few family members like my late father and my two sons, who have the disease, it can be a lonely thing, and very misunderstood.  How can one be sighted and blind?  Are you not one or the other?  Well legally and technically you are really blind, but it is called visually impaired in a more politically correct sense I suppose.
     The genetics of it in my family are heretogenic.  In other words, fathers pass the gene to daughters and daughters to sons.  Sometimes the daughter will or will not develop the disease, but there is a fifty percent chance that she will carry it to her sons, and her daughters would carry it.  I have it, I have two sons and they both have it.
     There are other stains like Ushers Syndrome which cause blindness and deafness, and there are other strains and complications.  Cataracts are a secondary symptom of RP, usually inoperable because of the person's limited vision, and a lack of it being useful.  
     There is no treatment or cure for RP, only measures to help slow progress of going blind, such as vitamin A palmitate 15,000 I.U. per day and less for children so as not to damage the liver.  UV protection sunglasses from the low vision clinic help and avoiding too much sun and light into the eyes.
     Often a person going blind may feel ashamed of the disability or perhaps self-conscious especially in unfamiliar surroundings and when using a new cane, which takes getting used to and support from friends and family.  I do not use my cane as much as I should, because I still have issues such as these, and I have been dealing with this progression for a long time now.
     If you have RP or a friend or loved one with it or a visual impairment, I would love to hear from you, and would love to hear comments from anyone who would care to comment on my blog.  Thanks for reading this.