School Project

[Blind Writer]

Hi. I have already sent a pm to the webmaster, but this may be quicker.

I am a teen in an American high school with Nystagmus. I decided to do my research paper on people leading normal, successful lives with the condition. I was hoping that a few people might volunteer to help me by answering a few questions. If you are willing, please answer the following.

First Name and last initial?

Country you live in?

Type of Nystagmus?

Did you attend public or private school?

How long have you had Nystagmus?

What is your occupation?

What type of aids do you use to conduct your every day life?

What challenges do you still face?

Thank you. I hope you can help me with my paper. This is also kind of a personal task for myself. I don't know anyone else with Nystagmus and I just want proof that my life will be as normal as possible when I leave home.

[the best friend]

Hi, I'm Erin. I don't have nystagmus but a friend of mine does. I told her about your project and she asked me to fill out the questions for her.

1. Connie J.
2. England
3. Caused by multiple sclerosis
4. Public
5. 8 years/half of life
6. student
7. glasses, TA's, magnification devices, and handhelds
8. "Fitting in; getting new people in my life to see pass the nystagmus and notice who I really am. People don't see me, they see my disability."

[Blind Writer]

Thanks so much, Erin. Tell Connie that I said thanks, too. She was the first one to reply to my project, and I'm starting to stress because it'll be due in a couple of weeks.

Tell Connie that I know just how she feels. People are all normal until they hear that you're legally blind and they get scared, like you are contagious or something. Sometimes they get really self concious. "Did that offend you? Can I help you with that? Oh my God, I'm so sorry, I forgot you can't see! It's the most annoying thing in the entire world.

[Paula]

my son ahs nystagmus so he has replied


William

uk

'congenital idiopathic

public

since birth

student

none

getting the school to help

[Blind Writer]

Thanks so much, Paula. Tell your son that his reply is greatly appreciated. I also noticed that this was made a sticky. I really hope that helps get some attention. My paper is due on the nineth of March and I'm starting to get really worried.

[Christopher]

Hi, my name is Chirs and I live in Wales. I think it's great that your doing a school paper on nystagmus, and hope the following helps with your research...

Christopher, B

Lampeter, Wales (UK)

Congenital / Idiopathic

Comprehensive (Public School)

Since birth, or very shortly afterwards!

Mature Student (age 37)

No visual aids, just glasses to correct myopia

Challenges - trasport is a problem (I'm not allowed to drive), and some sports are very difficult, even impossible for me to participate in, which is frustrating! It's also meant that certain careers have not been an option for me, but I guess when you live with that knowledge from the earliest possible age, it's not such a problem. Other than that, it doesn't really cuase me many problems on a day to day basis, other than having to move closer than everyone else to read signs, railway information boards etc etc. Emotionally, I guess I'm perhaps a little shyer and less outgoing than I might have been if I didn't have nystagmus - I get pretty self conscious when one on one with people, but if they notice my eyes wobbling they don't say anything, and I make a very conscious effort to correct my head position, even if it means I can't see as well (not using my null point).

Hope this helps, and good luck.

Chris

[Sarah Hood]

Dear BW:

That's awesome that you're doing some research and taking the initiative to tackle a unique topic. Good on you! Here are my responses:

First Name and last initial?
Sarah H.

Country you live in?
USA (Irmo, SC)

Type of Nystagmus?
CN - Congenital Nystagmus (Although the full name of my vision problem is PHPV, which stands for Persistant Hyperplastic Primary Vitreous, with secondary retinal detachment and secondary esotropia)

Did you attend public or private school?
For kindergarten and first grade only, private. But mostly public.

How long have you had Nystagmus?
All my life

What is your occupation?
I am a 33-yr-old librarian. I work at a college library.

What type of aids do you use to conduct your every day life?
None that I need to use on a consistent daily basis. Although I have a monocular lens that I keep in my purse to use when I need it. The most common things that I need it for are: seeing a menu board at take-out restaurant and if I'm sitting toward the back at a presentation/seminar I'll often use it.

What challenges do you still face?
1) Limited driving (But who's complaining. At least I can drive. I'm eternally grateful and thankful for that!)

2) Sometimes a bit of a social stigma. ("Mommy, why is that lady's eyes funny?") But as I've gotten older, that's been much less of a problem.

3) Sports and other physical activities. Balance and my ability to visually track things (like a ball) pretty much stink. But that's OK - no biggy.

BW: I know that there are different degrees of severity with nystagmus. So I guess how bad a person's nystagmus is will affect what he or she can do in daily life. My advice is: Yes, listen to what your eye doctor says, but ultimately only you in your heart will know what you can and can't do. As you get older and closer to adulthood and are able to have more control over your life, do your best to surround yourself with positive people who will support you. That will go a long way in helping you cope.

I hope this information helps you with your paper. Go get 'em!

Sarah

[radiox]

Hope everything goes well with this

1. Chris E
2. USA
3. Congenital
4. Public
5. All My Life
6. Radio Sports Broadcaster
7. Perscription Sunglasses are a life saver
8. Can;t obtain a Drivers License in New York, But will ask during my next eye exam if a resticted one is possible. Fatigue of eyes is problem, and ability to read sings in moving vehicle.

Good Luck

radiox

I would like a copy of report when done so I could read it if possible

[Mrs Chris McMillan]

1. Chris McM
2. UK
3. Congenital (now known as infantile nystagmus syndrome or INS)
4. Schools for the partially sighted in the UK
5. All My Life
6. House wife (home maker you say in the US) for 22 years but was an audio typist for a national industry in the UK)
7. Tinted lenses in spectacles, sun hats (not really a fan of peaked caps but its all there are). Hand magnifiers. Monocular for looking for bus numbers, train destination boards, going to theatres/concerts etc.

Poor balance gives me problems in walking over anything but nice smooth surfaces. Sports and other activities likewise affected by poor balance.

Hide behind the fact that I'm just under five foot in height so most people don't notice my sight impairment. Were I taller I could get close enough to much of what I want to read or reach for myself.

8. I can't read a number plate at the distance quoted in the UK so drivign is not an option. Lack of balance as a child meant I never mastered riding a push cycle.

There is also an American Nystagmus Network mail list which you can access via the yahoo groups. I'm sure the parents there would help you with this project.

Sincerely Chris

[Blind Writer]

Thanks every one. I'll copy the report here when I am done. I hope you keep posting because I think this is educational for all of us. Love ya'll so much for this.

Kody

[Alex Nevard]

Hi there some info for ya!

Name : Alex N

Country ; England

Type of Nystagmus : Pendular Nystagmus attributed to Ocular albinisum

How long have I had it : Since Birth

School : Private ( Just a small note in the UK it can be considered for some reason or other that Public schools are a sub-division of private schools, If you wanted to ask Free or fee-paying it might be better to ask State or private)

Occupation : Loosest possible terms I'm a first year med student

Aids : My friends mainly I get enlarged copis of workbooks etc, and on my desk i've got a nifty little video magnifier

Challanges : Transport - I can;t drive which makes getting to patients + hospital placements slightly more challanging though the city i'm in at the moment has a pretty good public transport system.

Getting my tutors/lecturors/examinaers to take notice of the various reports I pass to them saying what I need to function (Big exams extra time clear contrast slides) But i've had that since primary school so I'm getting kinda good at it!

Hope that helps

Alex

[Blind Writer]

Well, I finished my rough draft last night. I used a lot of your survey answers in my paper, but, sorry Alex, you didn't reply in time to be mentioned. I am still really glad people are posting, though.

The following people were referenced in my paper.
Christopher B. (Quoted.)
Chris E. (Quoted and used as example.)
Mrs. Chris McMillan. (Small quote, but used as an example.)
William (Used aas an example.)
Connie J. (One quote, very important quote, though, and example.)
Sarah Hood. (Used as an example, answer quotes, and quoted for closing paragraph.)

Thanks to everyone who helped me with this. I think this is a good way to learn how other people deal with the nystagmus. I know I've learned a lot. So I am going to now fill out my own survey, so that you can know me as well as I feel I know all of you now.

Name: Kody K.

Country: USA

Type of Nystagmus: Caused by LCA. (Leber's Congenital Amourosis.)

How long?: Since birth.

School: I attend a public high school.

Aids: My wonderful friends, enlarged papers, lamps, magnifiers, and there are other things that I need but I do not have.

Challenges: I have to be guided around in the dark because I have no light gathering cells, which is a real bummer. I won't be able to drive when I turn sixteen, but I can deal with that. I get lost easily, so driving would be hard, even if I weren't legally blind. Kids can be really mean. When my friends try to guide me around I get accused of being gay because I have a hold of a girl's arm, and I'm a girl. The school does okay with equipment, but I dont' have a VI teacher, so I never got mobility training or a cain to use at night, but I think Mom and Dad are looking into a Guide Dog for when I go off to college.

There are several other challenges, but it would take all day to list them, and I don't feel like complaining now. I'm just glad I can se at all, because i was recently informed that a friend of mine, who I haven't seen in years, who also has nystagmus, has lost almost all of her sight now. I wasn't even aware it was degenerative, but it's scary because five years ago, before they diagnosed me with LCA, they thought my condition was degenerative. So that could be me . . . it really makes you examine your life, you know?

[Blind Writer]

Well, I'm back. Thanks to everyone who helped last time, but I'm at it again with a school paper. The last one was good, but our teacher didn't even take it up. This one is a little more serious. My topid is The Aids Low Vision People Use and How They LIve Normal Lives. So here is the info I need.

1. Your name: (first name, last initial.)
2. Age:
3. One aid you use:
4. The discription and purpose of this aid:
5. Has this aid made life easier:

I would appreciate any help. Thanks.

[adam.cato]

I hope this helps, but i am only in yr 12 at the moment, so its really how i cope with daily school life:

Adam C

16

Enlargement of hand-outs

Most hand-outs were given to me as A4 on white paper, but i would get eye strain headaches, so the optician suggested i get them enlarged onto A3 paper. then a someone from the herts visual advisory team suggested i used coloured paper, so now it is on A3 pale yellow paper.

To begin with, NO! i was getting a lot of bullying about it , teachers would forget (so i had to miss part of the lesson to get it enlarged myself) and it was a pain in the backside to file . Now it is still enlarged, but only on A4 paper (double-sided) and on white, so it looks normal, but it suitable for my eyes.

(If it helps, i have congenital idiopathic nystagmus)

[Sofie]

1. Your name: (first name, last initial.) Sofie H
2. Age: 18
3. One aid you use:Magnifying glass
4. The discription and purpose of this aid: Makes stuff larger and clearer
5. Has this aid made life easier: Not everything has to be in large print - which can be hard to get hold of.