Patient Comments: Retinitis Pigmentosa - Symptoms

Please describe the signs and symptoms associated with retinitis pigmentosa.

Comment from: FLAWRA, 35-44 Female (Patient) Published: January 21

I was diagnosed with retinitis pigmentosa (RP) at 14 and I am now 44. I have lived a full life. I still work running my own business, married, travel all the time, and refuse to give in to this disease. Your strong will is important! I first started by bumping into people and objects. Then the night vision set in. Rods floating in my vision. You see less than what a normal person sees threw a straw. You have difficulty with stairs and depth perception. I had a cataract surgery two years ago. I think my other eye is due for cataract surgery. I saw halos of light. Before the cataract surgery I used to see the traffic light as four green lights, and after the surgery it is sharp and clear. The central vision is getting worse and the peripheral vision is less. I am a very hard working independent person so the worse part of the vision loss is not driving and having to wait for people to take me to places. Oh yes the best way to deal with this disease is to let people know you have it and what to expect so when you ram into them they are not upset instead they understand and are helpful. Your attitude matters, everyone loves me and wants to help and hold on to me to get to places. I just went to Rome last summer with my niece and had a blast going up and down the stairs there (over 500 stairs at the Vatican alone)! Don't let this disease stop you from living. Enjoy every moment of vision you have. See what's out there and memorize it in case you can't see anymore.

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Comment from: Lewis, 35-44 Female (Patient) Published: March 03

I was diagnosed with retinitis pigmentosa (RP) in 2001, I am now 43. It is very hard to go out in public. I'm always tripping over people or running into the pole. People that don't know me get very upset when I bump into them. I sometime think I need to ask my doctor about using a walking stick. But then other people with RP are worse off than I am. I'm very thankful that I can still see.

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Comment from: Lily, 19-24 Female (Patient) Published: March 13

I was diagnosed with retinitis pigmentosa when I was 12. You may notice patterns are bendy, depth perception is trippy and black static in the corners of your vision. As it progresses the black static will cover more of your peripheral vision. Because you only have small areas of vision, you may catch a glimpse of something and then look, only to realize it was something else. You will also notice your night vision decreasing, everything slowly getting darker. Even light sources will travel less distance and illuminate less space. Unshielded light sources (like car lights, lamps, light bulbs, street lights) will have large light halos around them. This increased light sensitivity will require you to wear sunglasses on bright days, otherwise it may be painful. All of these symptoms are things I experienced when the rods in my eyes are the spots affected. As each case of retinitis pigmentosa is only similar to others, and each person's case is unique, it is difficult to say what will happen. The disease may stop there, and your cones may be left intact. This would leave you with central vision, but no peripheral vision. Or it may progress, eventually leading to total blindness. You'll know your cones are pigmented because your perception of color will begin to fail. Symptoms of rod pigmentation are loss of peripheral vision, night blindness and light sensitivity. Symptoms of cone pigmentation are color blindness and loss of central vision.

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Comment from: Bern, 35-44 Female (Patient) Published: January 21

I am now age 43 and I am just diagnosed with retinitis pigmentosa this year, 2014. I always knew that there was something wrong with my eyes. I have a hard time seeing at all times of the day. However, night time vision is the worst. I always tell people that I may as well walk around with my eyes closed, because I cannot see a thing. I have to be hanging on to someone when I'm out in a crowd and in the dark especially. Sometimes it is very scary because I step on everybody. Those who know me understand but strangers are sometimes frustrated because I appear to be clumsy to them. When, I really cannot see, I can be looking in front of me but, I cannot see what is at the bottom and the top so, a lot of times, I am running into things or stepping on the children. As a result, when I go out I do not roam around. I usually stay in one place because I cannot see, if I start moving around I bump into things. At least I know what is happening to me now. I think that I should get a stick to help me be a little more independent and safe when I go out.

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Comment from: Deb, 65-74 Female (Caregiver) Published: November 09

I am a little confused at what I am reading in that it was my understanding retinitis pigmentosa was passed through families usually with the female as the carrier. My family was one example on my father's side. My aunt, my father's sister was the exception. My aunt was diagnosed when she was in her forties just after her son was diagnosed in his twenties. Both went from minor night blindness to blindness to the point of seeing light shadows before their death in the last few years. Another aunt was not affected but all of her sons were.

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Retinitis Pigmentosa - Treatment Question: What treatments have you or someone you know received for retinitis pigmentosa?
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