Patient Comments: Retinitis Pigmentosa - Symptoms

Please describe the signs and symptoms associated with retinitis pigmentosa.

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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Comment from: Eve, 55-64 Female (Patient) Published: February 20

With retinitis pigmentosa I see beautiful flowers and different formations, the formations that look like people.

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Comment from: Amos, 25-34 Male (Caregiver) Published: April 29

My son is under diagnosis for retinitis pigmentosa and his doctor said something which seems to contradict a point made on this site related to the progression of the disease. My child has problems with night vision (rods?). His doctor said that the type of retinitis pigmentosa she has was the kind that would only affect the rods of her eye. But, if I understand your explanation, there is no 'type' of this disease that affects only rods/cones.

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