Optic Nerve Hypoplasia Support Group
Optic nerve hypoplasia is a medical condition that results in underdevelopment of the optic nerves. Optic nerve hypoplasia can appear in one or both eyes, causing anywhere from a mild to serious visual impairment in the form of decreased visual acuity and visual fields.
So, i see that this forum isn't overly active but as there are so few support groups for ONH out there, I thought it would be a good place to start! My name is Robert and I'm 32 years old (33 on the 12th) and I've lived with ONH my entire life. Actually, until a couple of years ago, I never knew WHAT to call my visual condition due in part to being born and raised in a very rural part of the US and in part due to being born in 1980 which was about four years before serious talk of ONH really started.
At this point in my life, my ONH has pretty much stabilized to where it's going to be for the rest of my life. The one nice thing about having this condition is that rather than getting worse with age, it *can* improve slightly with the passage of time. This isn't always the case but it is in many. For me, the most notable improvement in my condition over time has been a secondary symptom of ONH called Nystagnus which is the involuntary movement from right to left (in my case) of the pupils. When I was younger, my eyes moved constantly but now has slowed to nearly no movement at all.
My visual acuity however hasn't changed that much over time, staying at around 20/500 in one eye and 20/800 in the other. What has changed in that department however is being able to actually get glasses that help! One of the main problems for me growing up and in my early adult life was not ever being able to tell my eye doctors what I could and could not see. No matter what lens they put in front of me, that giant E on the eye chart looked just as blurry to me. My last eye doctor however was able to tell me more than I could tell him by using medical instruments that allowed me to get glasses that helped a lot more than any I've ever worn. They don't improve how much I see but they make what I DO see a lot clearer.
I am also extremely light sensitive and avoid sunlight like the plague which can be a problem as i do enjoy some outdoor activities. Sunglasses help a lot in that area, the darker the better. This is also one reason I work nights, it's easier to function. That being said, I gotta say that learning to be adaptive is one of the best ways to cope with this condition. When I became an adult, I moved to a city where getting around didn't involve having to drive, since I can't. As i mentioned before, I chose a career in the cleaning industry (yup I chose to be a janitor and love it!) which allowed me to work nights and avoid over exposing myself to painful sunlight.
I guess I was fortunate because a lot of cases of ONH that I read about are also accompanied with other conditions which I do not have. I feel for people who have to contend with those because I know firsthand that going through life legally blind is challenging enough. I can't even begin to comprehend what people dealing with multiple issues have to go through. I only know what I've had to deal with and I guess from what doctors tell me, I cope pretty well. I don't use a cane or guide dog, I don't read braille, etc. Part of that is due to my stubborn pride over the years though, I'll be the first to admit that while I'm extremely independent now for it, I should have utilized more of the tools available to me growing up than I did if for no other reason than my own safety.
Parents raising kids with this condition are amazing! I know, my mom was one of them. I know now all of the fears she had for my future and the fears she still has now knowing I'm out in the middle of this big huge world (what parent doesn't worry though right?) and I also know the guilt she felt, wondering if she had done something during her pregnancy to cause this. Science now says no, while there are some high risk things that can contribute to ONH such as abusive drug/alcohol use, there is no known one factor that causes it. I've always thought my particular case had a lot to do with the fact that I was a premature baby (I weighed a whole 4lbs!).
I've heard a lot of people talk about "hard times" when faced with this diagnosis for ones self or child but you know I have always chosen to think of it as just a challenge and life is FULL of those and how we meet them defines our lives NOT the extremity of those challenges. My entire family raised me to never see my vision as a weakness or as something that limited me. Sometimes, I am sure that turned out to be more of a worry for them than me because it made me bold! I rode bikes, skateboarded, roller skated, did things that would drive the mother of any blind kid crazy with worry. Worry though she did however, she let me try everything any other kid would and probably a few she never knew about! I fell a little more than sighted kids and I even failed at some of the stuff I tried and though those times discouraged me a bit, I always got back up and either tried it again or moved on to something else. That is the thing I am most grateful for because had my family not allowed me to fully experience life, I probably wouldn't be able to do half of what I can now, my 150 bowling average included!
I am always on the lookout for the next medical miracle that may someday allow me to drive or just see a *little* more of the world around me but ONH isn't the end of the world. I hear better than a lot of people, my senses of feel taste and smell are awesome too. So, that's my story and I'm guessing it's mirrored by a lot of people living with vision loss, we're just people doing our best like anyone else. :) Hope you all enjoyed reading!
At this point in my life, my ONH has pretty much stabilized to where it's going to be for the rest of my life. The one nice thing about having this condition is that rather than getting worse with age, it *can* improve slightly with the passage of time. This isn't always the case but it is in many. For me, the most notable improvement in my condition over time has been a secondary symptom of ONH called Nystagnus which is the involuntary movement from right to left (in my case) of the pupils. When I was younger, my eyes moved constantly but now has slowed to nearly no movement at all.
My visual acuity however hasn't changed that much over time, staying at around 20/500 in one eye and 20/800 in the other. What has changed in that department however is being able to actually get glasses that help! One of the main problems for me growing up and in my early adult life was not ever being able to tell my eye doctors what I could and could not see. No matter what lens they put in front of me, that giant E on the eye chart looked just as blurry to me. My last eye doctor however was able to tell me more than I could tell him by using medical instruments that allowed me to get glasses that helped a lot more than any I've ever worn. They don't improve how much I see but they make what I DO see a lot clearer.
I am also extremely light sensitive and avoid sunlight like the plague which can be a problem as i do enjoy some outdoor activities. Sunglasses help a lot in that area, the darker the better. This is also one reason I work nights, it's easier to function. That being said, I gotta say that learning to be adaptive is one of the best ways to cope with this condition. When I became an adult, I moved to a city where getting around didn't involve having to drive, since I can't. As i mentioned before, I chose a career in the cleaning industry (yup I chose to be a janitor and love it!) which allowed me to work nights and avoid over exposing myself to painful sunlight.
I guess I was fortunate because a lot of cases of ONH that I read about are also accompanied with other conditions which I do not have. I feel for people who have to contend with those because I know firsthand that going through life legally blind is challenging enough. I can't even begin to comprehend what people dealing with multiple issues have to go through. I only know what I've had to deal with and I guess from what doctors tell me, I cope pretty well. I don't use a cane or guide dog, I don't read braille, etc. Part of that is due to my stubborn pride over the years though, I'll be the first to admit that while I'm extremely independent now for it, I should have utilized more of the tools available to me growing up than I did if for no other reason than my own safety.
Parents raising kids with this condition are amazing! I know, my mom was one of them. I know now all of the fears she had for my future and the fears she still has now knowing I'm out in the middle of this big huge world (what parent doesn't worry though right?) and I also know the guilt she felt, wondering if she had done something during her pregnancy to cause this. Science now says no, while there are some high risk things that can contribute to ONH such as abusive drug/alcohol use, there is no known one factor that causes it. I've always thought my particular case had a lot to do with the fact that I was a premature baby (I weighed a whole 4lbs!).
I've heard a lot of people talk about "hard times" when faced with this diagnosis for ones self or child but you know I have always chosen to think of it as just a challenge and life is FULL of those and how we meet them defines our lives NOT the extremity of those challenges. My entire family raised me to never see my vision as a weakness or as something that limited me. Sometimes, I am sure that turned out to be more of a worry for them than me because it made me bold! I rode bikes, skateboarded, roller skated, did things that would drive the mother of any blind kid crazy with worry. Worry though she did however, she let me try everything any other kid would and probably a few she never knew about! I fell a little more than sighted kids and I even failed at some of the stuff I tried and though those times discouraged me a bit, I always got back up and either tried it again or moved on to something else. That is the thing I am most grateful for because had my family not allowed me to fully experience life, I probably wouldn't be able to do half of what I can now, my 150 bowling average included!
I am always on the lookout for the next medical miracle that may someday allow me to drive or just see a *little* more of the world around me but ONH isn't the end of the world. I hear better than a lot of people, my senses of feel taste and smell are awesome too. So, that's my story and I'm guessing it's mirrored by a lot of people living with vision loss, we're just people doing our best like anyone else. :) Hope you all enjoyed reading!
I too am an adult with ONH. I am 45 and I can relate to a great deal with your story. Although I have ADD and I am dyslexic, I am fortunate not to have many of the conditions that often come with ONH. My vision in 20/300 in my right eye and pretty much nothing in the left.
I didnt know much about my condition until the 1990s when a new ophthalmologist gave it a name an explained it to me. Like you, glasses never really helped and no one seemed to understand that when I was growing up. Bright sunlight is difficult for me but living near the beach and loving the water, I have managed with quality sunglasses.
While being different was rough as a kid, I rode bikes, skateboarded and did must of what other kids do. I was lucky to have parents that never let me look at my vision as an excuse or a disability. About the only things they told me I couldnt do was gymnastics and drive a car. There is still no way for me to drive and I am too old to even think about gymnastics but I have a great family that is willing to take me where I need to go.
Although I have had to do things a little differently, my life has been very full. I have been married for 25 years, I have two grown sons, I managed an associate degree and almost a bachelor degree. I have thought college and tutored students with computers, worked for a television station and now I work for a Habitat for Humanity affiliate. Life has been good and I often say that if ONH is the worst thing life throws at me, then I cant complain.
Just another thought, with the computers, tablets and modern assistive technology we have today, I think life for a visually impaired person is much easier than it was 30 years ago. The biggest advice I can give a parent of a child with ONH is just let your child take the lead, they will figure things out and if they find out they cant do something, be supportive.