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AFBAmerican Foundation®
for the Blind

Expanding possibilities for people with vision loss

I Have Anridia/Nystagmus.....

Hi, I have Aniridia and Nystagmus my vision is 20/300 and I feel
like I am the only one that has it. People stare at me, laugh at me,
talk about me tell me, and even tell me that I am damage goods that I
won't be able to have a normal life I will have to depend on others to
do for me. I want to become a Registered Nurse I have not done it because everyone says i can not do it because of my vision I feel limited and I am starting to feel as though have this vision problem is a curse. I try to find information to help me be able to see on the internet and I bring my eye doctor my findings she and he act like I am making it up or something. I do not know what to do any more I feel so useless. The one thing I really wish I can do other than Nursing is driving I want to be independent I do not want to depend on others to do for me I need help because I do not know if I can take it anymore. Someone please help me!!!

There are currently 11 replies

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Re:I Have Anridia/Nystagmus.....



Hi I don't know if you are gonna read this I seem a couple of months late. But I have both as well as 6 other conditions. If you want to correspond through email I'm up for that. I can give you a lot of tips and help you out.


Re:I Have Anridia/Nystagmus.....



I have nystagmus since infancy and the one thing I want to tell you is that you should never let people discourage you no matter what.
I went through a lot of name calling but, I never let it get me down and neither should you.
One of the things I will say is that for us a will take some extra work but we can make it.


Re:I Have Anridia/Nystagmus.....



I am 49 and have a nystagmus and astigmatism, I have never been allowed to drive am not allowed to operate machinery at work and not allowed to bicycle on the public highway. I suffered years of wearing specs and having plasters over one lens from time to time, causing bullying at school. I cannot see the bus coming until its two or three metres away but I live a productive and happy life. These things are just an inconvenience, so my head moves a little from side to side and then, whats the problem. I am intelligent have a university degree in philosophy and three kids. Everyone has something, sometimes its really hard getting abuse from the Bus driver cos you stopped the wrong bus, but lifes to short to dwell on it.


Re:I Have Nystagmus.....



I'm 16 and have nystagmus and just had surgery recently to try and slow it down and it did and now my vision is good enough for me to get a day time drivers license. The doctor that does it is Dr. Robert Burnstine at the Akron childrens hospital


Re:I Have Anridia/Nystagmus.....



Hi you guys are saying the same thing I feel I am 15 and I have nystagmus and O.N.H I live in a small town where my HS is 300 kids and I am the only kid who is vissuly impaired with 80/20 and I need my pappers blown up and theres rummors going around say that I am not really vissouly impaired. i am so nervous to even start thinking about collag and everyone in my school can get there licence and everyone gets it when they turn 16 so right now I am very upset bout that topic. It is so nice to see that other people are going through the same thing.


Re:I Have Anridia/Nystagmus.....



My son is 9 months old and was diagnosed with Nystagmus. I have three brothers and a grandfather who all have nystagmus as well. Each of them have different degrees of the condition. I am a registered nurse and I have watched my twin brother suffer the same draw backs and obstacles that you all write about. My brother was declared legally blind when we were 20 years old. His teachers just thought he was lazy and didn't want to apply himself. As a result, he never made it out of the 7th grade. He was 17 and in 7th grade because no one took the time to realize that beneath this wonderful young man who couldn't read or make straight "A's" was a very smart person who simply could not focus to read what he was being taught. Today, we are 35 years old and he is a very talented man who can remodel old houses, re-wire houses, drive, hunt, finish concrete and basically do anything he puts his mind to. He is no longer legally blind. He has a wonderful optometrist who has given him weighted special contacts that significalntly decrease the pendular movements of his eyes and has increased his vision. My son, Nicholas, is 9 months old and has the same condition as his uncle. Luckily, today there is so much more that can be done with Nystagmus. Nicholas sees an ocular specialist, Dr. Richard Hertle in Children's Hospital in Pittsburgh PA who has successfully helped to significantly correct nystagmus and the long term effects this condition causes. My brother is also scheduled to see Dr. Hertle in December and he assures us that there is some degree of improvement that he can do for anyone with this condition. For Nicholas, there is hope. Although there is no cure for Nystagmus, there is improvements and procedures to help him. THere are no guarentees in life, but I know that I have to try for him to avoid all of the stigmas that my brother had to endure to offer him a better life. Keep looking. I am sure that you will be able to find a specialist in your area to help your dreams come true. And, most importantly, don't let anyone let you feel like you are not smart or worthy. Even with Nystagmus, you are the only one who can lower your self worth.


Re:I Have Anridia/Nystagmus.....



OK lets try this again...
Hi! I am 15 and I have astigmatism/nystagmus. I somewhat know how you are feeling. Sometimes people will look at me or call me names. It makes you feel really bad because you can't control it. Nobody can really understand how you're feeling unless they have it themselves. I want to go to college to become a gym teacher but I feel like if I tell my family & friends they won't understand since I could never do much in gym anyway. Another concern of mine is how I am going to get around the rest of my life, when I go away to college I want to live in an apartment but I can't do that if I can't drive. It makes me feel awful since all of my friends are getting their permits/licenses and I can't. I don't understand why God gave this to me and not other kids who go and get drunk, high or arrested on the weekends. I can picture myself driving to school and driving wherever I want to go but I just have to come to terms with the sad reality that driving for me will never be an option. I always dream that sometime down the line there will be a magical cure that will rid everyone of this horrible eye condition but back to reality. I just wish that people would appreciate their vision more and appreciate the fact that hey can drive and stop complaining about the high gas prices because i'd pay $10 a gallon if I could drive. Don't listen to what other people say to you do what YOU want to do it's your life...


Re:I Have Anridia/Nystagmus.....



I just wrote a huge response and it didn't even come on.


Re:I Have Anridia/Nystagmus.....



Hi! I have got both of those eye conditions. I had a meeting with a doctor when I was 33 years old. They know more now then they did when I was born. I was born in the mid fifties. Maybe you have done a lot of research by now. I found out it was genetic 11th chromosone passed on by the male side of family.
All the stuff I read about aniridia and nystagmus fits me to a tea.
If you ever want to chat about it and how I get along I'd be happy to give you some encouragement. I read your thread and felt compelled to reach out to you.
Let me know, I'm here!
Elphie


i have nystagemus



hi i have nystagmus also i am 31 and have had it since birth my vision is currently 20/200 and field of vision is horrible please join my message board at www.nystagmus.kaboserv.com


Re:I Have Anridia/Nystagmus.....



Hello,
I don't have anridia/nystagmus so i can't relate to how you are feeling but just wanted to tell you to hang in there and don't lose hope! Do what you believe in and if nursing is what you love than go for it, don't listen to the people who are discouraging you. Think of all the positives that you have in your life and believe in yourself!! Surround yourself around positive, loving people that love you for who you are!

Meg


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