Congenital Stationary Night Blindness
Posted by rhermy on 7/14/2011 at 8:36 PM
My whole life I have struggled to find someone with whom I can relate. CSNB is such a rare disease and I have never been able to find anyone who truly understands me. Even doctors are NO help.
5 years ago I finally found someone else with CSNB from Canada (actually similar in age too ) and it was the best thing that ever happened to me. I felt he was my soulmate in that he understood EXACTLY how I had felt my entire life. But as quickly as he came into my life, he left. He committed suicide 5 months after we met, as he couldn't handle the depression he battled due to his vision. I totally get it, but still hate him for it. I was left alone yet again.
So still I have no one who gets it. For anyone who knows what CSNB is, I feel like I am a part of both worlds- the sighted and the blind. I am expected to function and live normally, but as I get older (I am 30 now) I have found this to be increasingly difficult, if not impossible. I don't know how to manage and be independent. I have never qualified for any services, because as I mentioned before, I am sighted part of the time, and yet, completely blind the other parts. So it never works out. Summer is the best part of the year when it is light out longer and I can see better but during Winter I have very little vision and and almost completely reliant on others.
ANYWAY, back to my point. I am desperately looking to connect with someone who understands what I go through. I figured here might be a good place to try.... thanks.
There are currently 29 replies
Re:Congenital Stationary Night BlindnessPosted by rfalford on 7/15/2011 at 3:10 PM
My name is Rebecca and I also have Congenital Stationary Night Blindness, yet a rarer form in which other parts of my vision are affected. I can see some during the day, but have difficulty seeing low contrast, small print, and am very sensitive to bright lights (making sunglasses a challenge, as of course I don't want it to become too dark). I am generally reachable by email more easily than by a message board so if you post your email I am more than happy to talk with you/answer any questions you may have.
Re:Congenital Stationary Night BlindnessPosted by rhermy on 7/16/2011 at 11:09 AM
So happy to get a response! my email is email@example.com
I would love to hear from you!!!!
Re:Congenital Stationary Night BlindnessPosted by rhermy on 7/21/2011 at 7:08 PM
Anyone else out there? Would love to keep this post going in HOPES of finding someone out there, maybe someone who would also enjoy connecting and befriending another fellow CSNB person!
Re:Congenital Stationary Night BlindnessPosted by antg94 on 8/30/2011 at 5:03 PM
hi my name is Anthony and I live in England. I am 17 years old and I know exactly how you feel. I have CSNB and it's like half my life I am blind and the other half I have some sight. Although the condition is supposed to be stationary when I was younger the vision in one of my eyes changed for the better. However recently (since the age of about 15) I have noticed that things are getting harder to manage. I am contactable by email
hope I can be some help for you
Re:Congenital Stationary Night BlindnessPosted by antg94 on 8/30/2011 at 5:06 PM
sorry email address is Anthonyg080294@gmail.com
Re:Congenital Stationary Night BlindnessPosted by ckn128 on 10/7/2011 at 10:16 AM
Hello, My name is Claudia. I am a mother of three boys in which two of them have CNSB. Now ages 16, and 9. My youngest was not born with the disease. I am shocked about what has been written on this site. My children rarely complain about it. They know that they can not go and play, drive, at nighttime. We know that we have to look at colleges in a city or a very lit campus. you all sound so sad. Its not that bad. It could be much worse!
you can email me; firstname.lastname@example.org
Re:Congenital Stationary Night BlindnessPosted by antg94 on 10/8/2011 at 6:42 PM
The condition is one that doesn't get worse however I have been told by my doctor that when a person with this condition gets older, their brain demands more from their eyes. Therefore this is going to make simple tasks harder. I do not mean to come across as being down, however the condition can affect different people in different ways.
Re:Congenital Stationary Night BlindnessPosted by rhermy on 10/11/2011 at 2:28 PM
Agreed. Your kids are still quite young. I must say that in my experience, life has become increasingly difficult as I get older and have less and less support. It also depends on the experiences we all have in regards to our eyes, especially during childhood. A lot of our problems also grow more difficult (in my experience) as we get older and our problems get more involved than simply not being able to go out and play. I hope your kids like the city and that will be a good supportive environment for them for college. I, personally, hate the city, and though I forced myself to live in one for 3 years and now commute into one (out of necessity) still only do it because I feel that is the only option, not the ideal or one that would make me happy. And funny enough, even the city isnt always ideal in the dimly lit areas. I guess it also depends on how well each of us with CSNB sees... I believe each of us has a varied degree of vision. So not to be down or to complain, but just to say it IS difficult, even in daylight, for me at least to navigate. No, the condition may not get worse. But with barely any vision out of one eye and bad vision out of the other, it takes a lot of compensation even during the day too to get by.
Re:Congenital Stationary Night BlindnessPosted by antg94 on 10/17/2011 at 6:43 PM
I have set up a new website for people who are visually impaired. feel free to join ---its free.
it is only in its develoupment stage so I hope its ok
copy and paste url in web browser
Re:Congenital Stationary Night BlindnessPosted by carlaterry95 on 10/24/2011 at 7:30 PM
My name is Carla and I live in England. I am 16 and also have CSNB. I have been hoping to find people who share the same difficulties and am relieved to have found people. My symptoms also include; not being able to see in the dark, contrasting colours, reading small print, seeing long distances and I have a low field vision. This disability has proved to present me with many difficulties already throughout life and now that I am getting older I am worried about what else it will restrict me from doing. It will be great to speak to other people about how they deal with this vision. My email address is...
It will be great to hear from you!!
Re:Congenital Stationary Night BlindnessPosted by steffik on 12/5/2011 at 1:10 AM
I am a 56 yr. old female with CSNB. I never looked into it because I never met anyone else with this and it didn't seem like there's anything anyone could do. I am also very nearsighted with bad astigmatism and have always worn glasses. It has had a profound influence on my life and personality. I think my parents were too protective instead of encouraging me to go out into the world. But I've lived a pretty normal life, even going to a college that was very dark at night. I've always lived in a city with good transportation, got married, had a child. But I'm now separated and figuring out how to get around on my own again. Friends are great at driving me but it does affect what I do. I'm wondering how a new date will feel about someone who is kind of dependent at night. And I fantasize about what it would be like to have great vision! But I try and remember that almost everyone has something to deal with. The worst was probably when I was young and other kids could go out and play at night. And I do worry about getting my car home before dark in the winter. Hope this gives another perspective on being nightblind.
Re:Congenital Stationary Night BlindnessPosted by Mattallen on 1/24/2012 at 12:52 PM
Hello, my name is Matthew and I'm 16 years old. I was born with CSNB, and I think this forum (for a lack of a better word) is great. Honestly, I am shocked so many females have CSNB as it is an X-linked disorder. And if females 2 Xs, and one of the Xs is "good" then the female can use that "good" X. However, males only have one X, so they must use the only X. Just an interesting thing to point out.
Anyways, I hate having CSNB. A 16 year old boy not being able to ever drive at night sucks. Although I am happy I am able to play some sports (ultimate frisbee, basketball) I cannot play others (baseball, football). I have never met anybody else that has CSNB, and I hope we can all help each other out.
Re:Congenital Stationary Night BlindnessPosted by eliott'smom on 1/27/2012 at 4:04 PM
hello, I am a mom of a 3yr old. ever since my son was born we noticed he would look so much at the lightbulbs he would stare and would never make any eye contact with us. we were scared he would be blind, but as he grew we realized he could see. Although as soon as the sun would go down it was as if he was totaly blind. We recently took him to a doctor and he said he was born without his rods functioning therefore he couldn't see at night. It breaks my heart just thinking how that is going to affect his life...could someone please let me know what its like, or if there is anything we can do to make it better... I've searched everywhere trying to find people with the same problem as my son until I found this blog. Hope to hear from any of you.
Re: Congenital Stationary Night BlindnessPosted by guz667 on 4/21/2012 at 12:12 PM
Hello there. My name is Lee. I'll be 26 soon, and I have CSNB. Like everyone else, it is hard to find people who can relate with the situation. I work at a job that require me work nights and I cannot always get a ride for it, so I brave riding a bike. The street lights help some and I have some lights on my bike to help, but it is still the scariest thing I do.
I find it hardest on the social aspects of my life, since people most want to hang out or do things in the evening, which generally leads me searching for someone who isn't inconvenienced by giving me a ride, or staying at home and doing without.
It's amazing to find people who knows what's going on! I'd love to correspond with some of you! My email is email@example.com.
Re: Congenital Stationary Night BlindnessPosted by failedrockstar on 7/19/2012 at 6:42 AM
Hi my name is Jon. I have a rare form of CSNB, I also have Nystagmus. I have had these conditions all my life I am 38. Its realy nice to see i'm not the only once trapped between the sighted and blind world. I am registered as blind and when its dark only see black. In bright light I loose all contrast and for want of a better description see a white haze. In dull conditions I can see enough to get around and read large print. I have on many occasions felt like I am always being judged as on some occasions you can see things and on others you can not. I did try a guide dog for a while but as I have times when I can see well enough to get around it did not work out for me and I mainly now just use a long cane. It would be good to hook up with people who have the same condition to share expriences. :-D
Re: Congenital Stationary Night BlindnessPosted by rhermy on 7/26/2012 at 11:50 AM
What is your email? I'd love to communicate via email !!!
Rherrmann4 @ yahoo.com
Re: Congenital Stationary Night BlindnessPosted by Liz H on 7/30/2012 at 9:25 PM
Hi all who have posted here. My son has CSNB along with nystagmus, high myopia and estropria. Everything you all have described is exactly what I feel like he is going through, especially as he starts high school. Matthew possibly you could share some words of wisdom that I could pass along to my son. Thanks.
Re: Congenital Stationary Night BlindnessPosted by Teambunting on 9/4/2012 at 11:31 PM
My seven year old son had csnb. I am learning on how to help him around the dark. I feel when I take him to the doctors they cant give me enough information on this disease. I would love to hear on how other people cope at school. He is going into the third grade. I felt last year his csnb gave him trouble with his reading. Is this possible? I did find out we haveto protect his eyes from the sun for his eye sight may deteriorate faster. he is already at a strong prescribtion . I would love so help to help my son
Re: Congenital Stationary Night BlindnessPosted by Liz H on 9/26/2012 at 6:45 PM
I am sorry to say that I don't know what effect CSNB has on reading as my son read at an extremely early age -- thus throwing us off as parents that he had any vision issues. Turns out, reading was all he could do because he could hold the book very close up and see the words to read them.
My son is now in high school and elementary and middle school were fine. My only advice is to explain to his teachers that if they show a movie or some kind of presentation with the lights dimmed, that taking notes might not be an option.
Also, the school that my son was in would have these "lock down" drills and the students' safe zone was a storage closet with the lights off. He was very fortunate that he had a very good friend who would stay with right with him and not let go of his hand while they were in the darkened closet. Of course, Katie, was one of those 8 year old girls who was already acting like she was 40 in the 3rd grade.
Please talk to his teachers and find out about movies, smart boards and any kind of emergency evacuation plans.
I wish you all the luck and your son, too.
Re: Congenital Stationary Night BlindnessPosted by Teambunting on 9/27/2012 at 8:53 PM
Thank you for your light of hope for my son and good ideas. Good luck as you go through high school type problems and situations with your child. I just want my son to succeed as much as possible.
Re: Congenital Stationary Night BlindnessPosted by lozz9812 on 10/25/2012 at 6:09 PM
Hey, Im 16 years old and i have CSNB and mild short sightedness (i can just about pass the driving eyesight test which was worrying me!) .
To parents worrying about their child, what helped me alot was learning the layout of my house and having a good torch near my bed. As to school, if we had to work in low light i would just ask if one of the lights is turned on or if one curtain is opened. Ive always been abit troubled with reading words on the board because of the shortsightedness so i dont know what is affected by what but reds are harder to read than blacks i find- its a good idea to ask your child and ask the teacher about handwriting/font size and colour. Reading from books (for me) are fine aslong as its good light. Places like cinemas, zoos(nocturnal exhibits) and some amusement park rides (the horror ones mostly) can be difficult to move around but having supporting friends and handrails help :) As well as the practical side of things be prepared for the emotional side - i felt faulty and weird growing up, having large pupils made people joke that i look like an insect or that im secretly in love with them. some opticians would freak me out and ask endless questions about everything because its a rare thing to have. wish everyone the best of luck and parents do not worry just be supportive and invest in a small high powered torch (and do not move furniture around too much!) sorry for the long post, i hope this has helped :)
Re: Congenital Stationary Night BlindnessPosted by JonD on 11/17/2012 at 12:45 PM
Hi my name is Jon but not the one who has posted earlier, I am a 44 year old male living in Britain. I must admit that I do not appear to have as serious symptoms as some of you who have posted earlier but CSNB has affected my whole life. I was only diagnosed a couple of years ago when in fact my nephew was but in a way it was a relief for me because I always knew something was wrong apart from the short sightness that doesn't let me drive, weirdly my whole family (apart from now my nephew) has 20 20 vision. There is a lot I want to talk about to those who understand and have the condition because up until now I have had nothing. My local hospital consultant when telling me that the results of the tests I had had showed I had CSNB asked me if I had looked it up on the internet and when I said I had he told me that I now knew more about it than him and that was all I got.
I would like to hear from you.
Re: Congenital Stationary Night BlindnessPosted by gemmadouglas on 12/2/2012 at 4:13 PM
hi my name is Gemma and i have a 11mth old son who has been diagnosed with CSNB, he also has nystagmus , i would love to speak to some of you. we are in Scotland, UK
Re: Congenital Stationary Night BlindnessPosted by Keenan330 on 12/6/2012 at 9:52 PM
Hi my name is jesse and I'm not sure if I have CSNB but I have an appointment with my eye doctor on the 24 of this month ... I'm 19 and I just moved away from my family to attend school.. I also recently got a job at a airport deicing aircraft .. I'm having trouble in the mourning seeing because its so dark.. I also can't see at all really when driving I have to use my brights... I have really bad night blindness ... I went to a club a few months ago and couldn't see anything it was to dark.. My condition is affecting my life a lot now and I need a solution .. I can't continue like this.. It's affecting my work life, my social life , and I feel limited when it comes to dating.. Jesse.firstname.lastname@example.org
Re: Congenital Stationary Night BlindnessPosted by loulabelle88<3tj2005 on 12/10/2012 at 7:50 PM
My little boy is 7 and has nystagmus, astigmatism, moderate myopia, photophobia and csnb... I feel he gets frustrated with his sight at times and tired but because of his nature he doesn't complain or tell me if he's finding things difficult. Another thing I find it difficult to get him to sleep at night, does anyone else have this problem? He's such a lovely boy I just want to give him a great life as any mummy does. I've only met 1 person that seems to know anything about csnb but still mote tests etc ate being done. If anyone has any advice to give it would be greatly appreciated.
Re: Congenital Stationary Night BlindnessPosted by Mrpostal3rd on 3/13/2013 at 12:47 AM
My name is James and since I was 15 I'm 31 now. I was told I have star ghats disease, with a rod deficiency. Now after new filed exams mostly erg's my new doctor says my rod problem may be cause by csnb! We are currently still waiting for some information from my moms side to pin point this seeing how a blood test runs like 500 US dollars! All my life I have had staticky like vision have never seen a black board clearly even In The front row and have never truly seeing a clear face even up close. One thing that is throwing my doctor is I have good color vision and can see far away fairly clear as can be expected but can't pass an eye exam even at 20/80 I still read fuzziness. One thing I can say to those still in school with poor eye sight listen and learn to write in the dark without looking when taking notes during dim lit settings. I can now take notes in church with out looking at what I'm writing its not easy but it works! You can take a blank paper and use a ruler and make horizontal lines then when your writing in the dark you can feel a straight line the time to do this is an extreme pain but it will help to keep legible note taking when you can't see. Hope this may give someone help or an idea that might just help those still in school! Best of luck and never give up! My email is email@example.com if anyone wants to write me!
Re: Congenital Stationary Night BlindnessPosted by Sunnyy8 on 4/25/2013 at 11:19 AM
Hi my name is anurag hamilton i m 24 nd i have same problm nd i am totaly frustratd frm life i cnt walk in night i feel like dieing .. whats use of living like this .. one night while crosin roads i hit bycycle bcoz i cnt see him i cnt liv nrmal life i love one persn bt how cn i tel her i am half blind .. i cnt date.. i cnt tel my parents my conditn any 1 plz talk 2 me firstname.lastname@example.org
Re: Congenital Stationary Night BlindnessPosted by 1530kylie on 5/1/2013 at 10:55 AM
monday hi all my 6yr old has night blindness myopia and nystagmus he is an amazing boy who needs to keep growing in confidence.we know he can do alot of things all others can do as long as it is modified for his needs eg big bright balls torches for night time larger fonts for school and homework.when he gets tired stressed or sick its worse.there are hurdels along the way that we just keep finding out how to modify for him so he can learn to grow and be confident in our world as a parent we are his advocate and am not afraid to make all aware of his needs as he deserves only the best and we want it all to be as easy for him to enjoy and grow. i am takng him out at dusk on our bikes with torches so he is not afraid he is told his eyes work differently so that its not a negetive as we all have challenges, but it is also heartbreaking to watch him struggle with things or new hurdels and then i am quick to research and figure out how to make it easier as our latest is him finding his friends at school or if anywhere and they start running as he cant see past 6 mtrs any info to help him would be great. .
Re: Congenital Stationary Night BlindnessPosted by 1530kylie on 5/1/2013 at 11:09 AM
hambuger hi i just posted info on my 6 yr old with night blindness high myopia and nystagmus this is for the mum with 7 yr old boy having problems sleeping we have his door opened with a brighter than normal light as his night light and hallway lights on we have been told if u go into a dark room from a bright room your eyes will adjust to the dark poeople with night blindness dont. hope this helps you and your gorgeous boy can get well rested as it wil make it easier for him hope it works.
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