X-linked Congenital Stationary Night Blindness is a rare genetic non-progressive retinal disorder.
Thanks so much. I will e-mail you there in the next day or two.
you can contact me through my new website http://www.vision-forums.moonfruit.com/# hope i can be of some help
Thank you so much. How do I reach you to talk with you. You are the only person in the world who has responded to this request, and I am thankful. Please let me know how to reach you. If you prefer to talk online I understand. My little boy is almost 3 and I need to see how this is going to affect all of our lives. More importantly how is this going to impact him? What do we take for granted that he cannot do? What can we do to help or encourage him? His prescription for short sightedness is pretty significant but he does really well with his glasses. Of course I have a million questions so any insight would be helpful. Looking forward to hearing from you.
Thanks Anthony. this is really helpful. My little boy has Nystagmus as well. This is pretty common from what I understand. Does it feel uncomfortable or do you not even know that it is happening? I am thrilled to hear that you are doing so well. Good for you that you just get on with what needs to happen in life. I am feeling better after you sharing this info. I do however want to understand what it is like to not have peripheral vision and what it was like going to school when you were younger. Was there anything that you had to do to help in the classroom enviroment. I am assuming that you went to public school. How were the other kids with you? I never thought about dealing with traffic during the day - just assumed it was a low light issue. It is hard to know at this point what my son sees as he is so small and describing it to me is too hard.. His vision prescription is -12 and climbing. Not trying to be nosy but how is yours? both of his eyes are the same. Is yours much higher? What do you see when you are not wearing your glasses? I know that he has peripheral vision issues as he has to turn his head to see things and just like you, ball sports are not his thing. This is a small price to pay as far as I am concerned. As for taking a taxi - good that you have this option. Here in the USA things are spread out so far and taxis are not as prolific. We will cross that bridge when we get to it. Thank you so much for sharing. I hope that the questions are not too personal. I just want to help him anyway I can. You have done an amazing thing by sharing this info with us. Curious where in the UK you are. My aunt lives just north of London.
Hi i was diagnosed with CSNB at the age of 3 months. It is not a progressive disorder and doesn't usually get worse or better. However different aspects can make the condition seem worse. I have short sightedness (that was worse when I was younger). I have a condition called Nystagmus which causes the eye to move around. The Nystagmus in my eyes has slowed down as i have got older. I also have low field vision which means I can only see directly to the front and i have to move my head left to right to see in other directions. I am 17 now and I am studying at college. Schooling isn't a problem as schools have Learning support teams which help with adapting and enlarging of work. However there are some things that i can't do. These include gaining a driving licence, working for any of the emergency services and various other professions, playing ball games (as my head kept on being hit by balls i couldn't see) and getting around on my own (epesially in the evenings and at night). I also can't read small text. I get a taxi to college everyday and I had one through school too. this was because my mobility skills are not brilliant and i find it difficult to deal with traffic. I get tired a lot because my brain tries to compensate for the loss of vision in the eye. It also takes me a long time to read. apart from that there are just small adaptations to day to day living such as leaving a light on in the evenings and sitting close to the television screen. If you have anymore questions please don't hesitate to ask. I hope what i've said will help Anthony
My little boy is 2 years old. He was diagnosed at 6 months with csnb and I am looking for anyone to talk about the progession as well as what we are/could be expecting to change as he grows. His myopia (short sighted) has gotten worse within the last year. If you have any info for me if you or a family member or friend has this I would appreciate you getting in touch with me. It is really hard to find non scientific info. We just want to know what it is like for our little boy. THANK YOU!
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
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Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
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Created by Antg94 | Last updated 19 Oct 2011, 03:07 AM
Created by moonhump | Last updated 14 Oct 2011, 03:32 AM
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