What is Optic Nerve Hypoplasia
Optic nerve hypoplasia is a medical condition that results in underdevelopment of the optic nerves. During the second month of pregnancy, a structure called the optic stalk develop...
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HI. I'm 28 and have ONH. I can see fairly well from one eye but very poorly from the other eye. You know, I see a lot of parents on here doing research on their kids' condition, and it bugs me a bit that my parents never did anything like this. But I guess my parents never had many resources, or much initiative basically, and they've always worked hard jobs having never finished highschool. I was the first to do that, and also finish college. Its funny kinda. I can do a lot less than folks in my family: driving, sports, ect, but in other ways I've done a lot more than anyone else.
But it was only until recently that I've used or wanted to use any adaptive technology. I don't use much, just standard visual modification on computers, and I really want to buy a nice monocular to help me cross the street, see far away signs better, I could see myself using it a lot. I've always had a hard time dealing with my limited ability to go places. I live in OKC, one of the biggest cities in the US, and we don't have good public transport at all, so it's hard to do things; I haven't been to the grocery store in a few weeks cause I haven't had a ride. I was married for 2 1/2 years but my wife & I split up 7 months ago. I'm usually pretty upbeat & optomistic, but since then I've been pretty depressed which compounds the no transport thing. At least my wife took me around a bit when we were together, but even so it's hard to have that feeling of independence. I started seeing a shrink because, frankly, I can for free through my job, so why not? After talking she had suggested I find a group to help me deal with things related to my eyesight. So here I am. I know this is really long, and comprised of a bunch of rambling, but I figure maybe some good can come of it. I'm almost 30 and have been living with limited sight for my whole life, but lately I'd like to meet other people with similar challenges. I'm also open to any questions or comments from anyone who would like to ask, parents, young adults with ONH, I'm a pretty strong, open person, I just feel I need a little support from time to time. Posted on 07/21/09, 12:07 pm |
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Hi There,
Sounds like you are a pretty terrific and strong individual, let me make a comment about the statement you made regarding your parents, I am a parent of a daughter aged 29 with Septo ONH, in 1980 when she was born, there was very little information available, infact I was told it was just one of those things that went wrong during my pregnancy, that really wasn't much help!! It is only in the past 10-15 years that I have really been able to get much more information. She was treated as though she had cerebal palsy and was registered blind. We are all different individuals and we all respond and react differently so don't feel let down by what your parents did or did not do. From what I read, they must have done pretty good for you to be as strong as you are. You are allowed to feel down, I have no idea what it must be like to have limited sight, I can only respond from watching my daughter struggle with life, saying that she is a fab young woman, but with much more to deal with than just limited vision. I think it is great that you want to share your experiences with others, I sure wish I would have had someone like you to ask questions when my daughter was younger. Keep looking at life with a full cup, not half empty. Well done you!! 
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