Nystagmus The Way We See It 

The little girl with albinism is so adorable!

i actually teared up watching this. i wish i could have shown this at my IEP meetings in school and maybe it would have been understood better.

Damn, man. It's reassuring to hear that so many people share my problems. I've always felt really self conscious about this but hearing others speak about it - successful people, no doubt - put me at ease a little, I think.

I'm 38 years old. and I'm really just now learning about nystagmus I've had it my whole life.

I was born in the early 60s with severe myopia and nystagmus. Was never really a big deal till I got to the higher levels in the school. Mercilessly bullied to the point of having to fight my way through school, what made it worse was having to constantly change schools, two different elementary schools and three different high schools. Not only was I always the new kid but I was also the strange kid. Did my best to hide my bad vision to the point of probably risking my life at times, thought I was hiding it but had no idea how bad the nystagmus was. people saw me as normal till I noticed my eyes moving constantly, then thought I was shifty or trying to pull something off for dissing them. Didn’t truly realize the impact it had until I got older and was in a work position dealing with the public. Had accusations made about me that I just couldn’t figure out the reason for, at times to the point of almost losing my job. 60 now, almost completely blind, living independently. Harder now to dive back into the dating game with a little vision, and a realization that people are looking at my eyes and trying to figure out what the hell is going on with me. Especially with such critical takes on others in the dating world. Listening to the familiar experiences of others almost brought me to tears here. Struck me deeply to the core. Oh well, like they say, what doesn’t kill you makes you stronger!

You have to go through your life walking past people who know you. Every day constantly knowing people think your ignorant, not being able to read a road sign a street sign the price of things cafe wall menu etc etc etc etc and it really sux! Sometime your driven to utter despair while isolation and depression becomes a friend.

I'm only 11 and it makes me feel happy when I see people with this

Oh my Lord I'm not alone ;~;

Thank you for this amazing video. I'm in tears. My baby has nystagmus and this shed some light

I thought that I am the only one who had this. I didn't know that it's a disease. Thanks for making this video this helps me lot.

31 years I have been alone ❤️ not today 🙏🏻

I also have it and I have gotten asked before, "Whats wrong with your eyes?" I have also been asked, "Why are your eyes moving?" But i'm used to getting asked that. It is also hard to explain why I have it because I suck at explaining things. I also had to get surgery for my focal point because I would look at you with my chin to my chest then my eyes look up. But I have had it since I was born. But my vision sucks. I also tilt my had naturally, I have for as long as I can remember. It is also hard for me to play sports because I have bad hand eye coordination, I don't know if that is because of my nystagmus. I also have to be in the front of the class otherwise I can't see. Lastly, I have to have everything like an inch or two from my face so that I can see.

Thank you for this video. My daughter has congenital nystagmus and is struggling at the moment to read and keep up with the notes on her sheet music when she plays her clarinet in band. She has been told by her ophthalmologist that she will be able to drive when she comes of age, but after seeing this video I'm wondering if in all practicality she won't. I guess there's always Mum's Taxi and Uber! There's always a way around life.

this video was awsome, I have it and I could never find that much informationon internet about it, its great to just feel like there are people who deal with that too, so you don't feel odd

It is quite crippling in actual fact, I was born with it too.

I feel very blessed to have voluntary Nystagmus. It's even a crowd pleaser at the parties!

Struggled my whole life with this .. in so many ways

Since I remember, I have Nystagmus. I wish everybody healthy eyes but to discover Im not the only one makes me feel more normal.. thank you

I can just made my vision shake from side to side really fast in a blurry motion but I can control it and when I am not doing it, I can see perfectly fine.

Brilliant video. Thank you Richard and the Nystagmus network team!

Well done Thanks for making this video!! I have a condition called Achromatopsia (very rare) and one of the symptoms is nystagmus. When I was a teenager, I met a beautiful young African American woman at a blind and low vision workshop who had albinism. She could tell that I was uncomfortable with my nystagmus and helped me to cope with it by telling me that I had “dancing eyes”. I’ll always remember her for that and the fact that she was very cute!

When it comes to physical standards, I have a few problems. Not only do I have nystagmus, I also have Albanisim, Photophobia, V pattern esotropia and just general eye problems in general. I also cannot hear our of my left ear, and I have a mild deficiency for loud sounds in my right ear (in medical terms, bilateral sensorineural hearing loss). I only learned today that I had nystagmus, and I even thought it was normal! It clears a lot more things for me though, and I just find it pretty cool. Applause to everyone else living with nystagmus too, because I know it's hard but I honestly think it just makes you unique!

I need my friends to watch this Because they always ask me These questions

I have nystagmus and I didnt really care that i had it.But up until recently ive felt really insecure and it has caused me to loose alot of friends because i cant even make eye contact.i need help!!!

4:28-4:38= SO TRUE. I have nystagmus, yet can hear & smell things most others can't.

loved how different perspectives were shown! I have been in college, I am an artist, I edit videos for RU-vid, and I have taught and worked with children with disabilities. I learned American Sign Language in college despite my low vision. It is a skill that got me my current job.

Eyy, I have voluntary nystagmus and I creep people out with it. 10/10 superpower.

Thank you for helping to inform people and to raise understanding about Nystagmus.

Thank you for this video. I didn't know what it was till my late 20s and I was born with it. I recently tried getting my driving license and I couldn't meet up with the requirement. Made me feel really bad. It is a disadvantage but not a disability! Not being able to drive doesn't make the world a terrible place....

Great video! I have Nystagmus and I feel like literally everything is blured and I will not be able to drive. Life is hard when you have Nystagmus. Even though Nystagmus is a disability, DON'T put your self down or think its bad. Maybe you have something that your better at then others.

One of my friends has Nystagmus and at the time I didn't know what it meant. Now searching it up made me cry because he wants to be happy but he just gets bullied in school. I usually didn't help him but now knowing how he feels and sees I will defend him like crazy.

I also have nystagmus and it effects my vision but also my balance, I feel like I'm in a constant earthquake

I have nystagmus and I barely notice any movement or blur really, i guess i'm used to it?

As someone with voluntary nystagmus, I can only imagine how terrible it is for this to just happen.

I have nystagmus as well! I've also had many experiences where people wave to me and I don't notice or I can't read the chalkboards

Thank you guys for making this video. It feels good that I am not alone

I have nystagmus but I cannot look upwards into people's eyes and it is worse because I'm small

I really love nystagmus. It makes me unique because no one that I know even knows of nystagmus. My teachers say “Look straight.” Or “Stop wobbling your eyes.” And i absolutely hate it. Other people ask me why my eyes move and I tell them that I have nystagmus. I don’t know. It makes me really sad. I can’t look out the window. I’m not going to be able to drive. My vision is getting worse. But everyone has problems right?

I was born in the 80s and I have congenital albinism with the associated visually loss of myopia, nystagmus, photophobia, astigmatism and strabismus. There was absolutely NO help whatsoever back in those days. I struggled immensely through school and my day to day life. It was only when I was 18 that I was told what I had. I am now in my 30s and obviously I still struggle but I manage with it. unlike those that may have developed visual difficulties later on in life, I have never known any different so I just get on with it. Still wish I could drive though 😢😢😢

Im soo happy to see this, I've had nystagmus since I was 9 so it warms my heart to see im not alone 😊 thank you soo much for this

One of my best friends has nystagmus and one lunch we kinda just,, talked about it. That night she sent me this video and honestly, I am so proud of her.

Just I read the comments and saw your all experience I have also nystagmus by birth now I feels good that m not alone,one more thing that nobody judge me that I have it.they only told your eyesight is low I Tell them therefore I wear glasses I can drive bike.and my parents encourage me always I thanks to God give me beautiful family

Thankyou for this education.x

I can shake my eyes whenever I feel like it and when people ask me what it looks like for me I say I just see the world moving side to side rapidly and it only does it by itself when I’m anxious

Hi my name is Rachael I also have albinism And nystagmus I’ve always struggled in school and out of school with it But to know that there is more people out there with the same as me brings me comfort

ive got nystagmus too and everyone on school bully me with it..

I use to have to take tests that were super big. Everyone would say, "Wow, lucky!" I never knew I had it until now. I really thought I we the only person in the work that had it. I would never look people in the eye because when I as younger I didn't know why my eye does what it does. I never got bullied cause of it tho. People would say it's awesome.

Kids at School: “The front row is boring! I wanna sit in the back!” Teacher: “Okay, students! Today we are moving seats!” Me: “Hey, teacher. If you’re going to move me, then I still want to sit in the front so I can see the board.” (So kids wouldn’t make fun of how bad my vision gets) Teacher: “Okay, we can do that.”

I have Voluntary Nystagmus (basically i can shake my eyes pretty fast like they do, but i can control when to stop and when to start), and I just thought it was one of those random abilities like wiggling your ear, but now I feel bad for some reason knowing how people with Nystagmus see the world and not being able to help them. It's really amazing how they manage to live even seeing everything like this, I get tired after doing it for a minute. I can't even imagine how they feel seeing life that way.

Hay, for those of you out there with impairing eye conditions such as this who want to break into sports------try CLOSE-CONTACT SPORTS that focus on feel more than sight. Personally I did Japanese Jujutsu and swordsmanship, which turned out to both be excellent for visually-impaired people because a good sense of being able to 'see by feeling' gives one an advantage over their more visually-dependent (thus slower, and more easily visually-decieved) training mates! :D Sounds like this guy came close to discovering that through football and rugby, but yeah there is still the element of an airborne ball in those two... I.e. in swordsmanship, it is good practice to "control your opponent" by almost NEVER LETTING GO of their blade. That contact-point between your blade and theirs, though sheer sense of touch, is a direct communication line forecasting their next move; most sword-strikes move too quickly for normal-sighted people to visually perceive, anyway, which makes the sword arts virtually a blind sport on BOTH sides of any duel! :D

Every time in school I need to sit at the front Of the class everytime

This video is awesome! Is there anyone here who has nystagmus and their head shakes involuntarily? My head shakes involuntarily and I got bullied because of it and it made me self conscious sometimes.

I have nystagmus. It is very annoying. I was bullied in my school, college days. I scare talk to someone eye to eye bcz they look my eyes & start fun of me. I have no problem of seeing world. I can see clearly, play sports. The only problem is focusing minute things like reading books. It took a little while to focus on things & then the objects become clearer.

i am 12 and i have mystagmus and ocular albinism and i have recently started wearing contact lenses, but they move because my eyes are forever moving.

This is one of the hardest eye diseases to understand and I've had mine since birth. Even though I have this it not mean that you can not have a successful career. and live a normal daily life.

My nystagmus never gave me issues. I was born with it, so I was told that my brain pretty much trained itself to compensate. I see everything perfectly still. Only when I'm very tired I see sometimes a little shaking, but mostly lights in the dark.

Amazing video. Watching from London.

Wait a minute I can do this with my eyes, feels hard to focus

Thank you

For me, the world moves - it shakes. When I work on the microscope I just use one eye only and let the other wonder. If I close my eye - the nystagmus in the other eye goes haywire!

This was so great! And very relatable!

Voluntary nystagmus people assemble!

I have nystagmus and sometimes I would get bullied but I never let it get to me

I have it too :) great video to help explain it to people who know you and want to understand 😃

I have also nystagmus but my head is in motion to control my eye ball

I have nystagmus I've found it really hard starting high school xx 💖

Im not trying to brag but out of the millions of people who have nystagmus i am the #1 best seeing kid with nystagmus. i was born completely blind but now look at me.

This? good, super good. Not good with words but this video helps me a lot with writing a character that i headcanon that haves nystagmus. I just really like that character even if i am not good at writing

I have nystagmus. I always sit in the front row LOL. I’m in college and if you have nystagmus and are struggling just know you aren’t alone and YOU CAN and YOU WILL!

I never knew albinism came with such an increased risk of visual abnormalities. Interesting.

A escola teria sido muito mais difícil para mim se eu não tivesse bons amigos, que sempte ditavam todo o quadro para que eu copiasse a matéria. Os professores não me davam muito apoio, mas o governo enviava uma prova especial com letras maiores para mim todo ano, era algo que me ajudava. Até hoje tenho muitas dificuldades, como pegar ônibus, enxergar placas, não posso dirigir e nem usar lentes de contato por conta do astigmatismo alto também, mas estou lidando. Afinal, 21 anos convivendo com isso, uma hora você se acostuma. Ainda me frustra muito ver todos os meus amigos e pessoas mais novas que eu dirigindo, isso facilitaria minha vida de forma inacreditável, isso me deixa um pouco triste. Sabemos como no Brasil o transporte público é caótico...

My dad has nystagmus and I always wonder how it affects him. It keeps surprising me what he can and can't do. Once when we were spectating a game of football, the ball was kicked in our direction and people yelled "watch out!" and everyone around us ducked, but dad did nothing and it hit him right on the top of the head. That didn't surprise me, and I was sad it didn't occur to me to help him out. I come straight to the rescue when he's lost a nut or a bolt on the ground, though. I've never heard of anyone who was teased because of it, which I find sort of peculiar. I wonder if maybe it's because bullies love it when the victims look scared, while people with nystagmus appear to me to have an expression that's almost stoic. I find it looks a lot like they're always processing impressions calmly and critically.

Unfortunately i was born with this and people always ask me the annoying question " why dont you get laser" because my eyes shake. A laster wont work. Vision is shakey and blurry. When the eyes shake your world shakes. And people treat me like a freak. So i stay away from people and dont leave home. Unless its to work and thats hard and embarrassingi go to doctors, eye dictors, specialist and they tell me basically oh well live with it. Theres no cure.

I have this eye condition nystagmus since I was a kid and still do, from side to side, my head moves to, wish my insurance would pay for laser or surgery on the eyes

This was a strange Orange is the New Black episode.... (for real though it's great to see information about this professionally produced!)

i have never met anybody else with nystagmus i don’t have it too bad i am lucky to be able to box and play rugby well but i have to tilt my head to the side and people always mimick it and i laugh it of but it kills inside my deepest empathy to this suffering with me

Honestly I wish I could show this to the people who pick on me because of my visual impairment for sitting one inch from the TV at home

My little boy is 17 months old and has this. Both his eyes shake. I worry For Him and feel sad For Him

What a great video and interesting insight into nystagmus. #wobblywednesday

i have this but it's completely under my control i can only imagine how bad it would be if i could not.

When my eyes started twitching I shook it off but it kept coming when I looked at trains. People used to be scared of me but I didn't let it stop me. It is like a vibration going on in your eyes. I can control it like some people and use it as a trick to scare people and I felt better when my teacher had it too. Btw it's is something I was born with.If you have it just know that we're not alone. I can control it luckily and I know not everyone who had it can. Just get through it happily :D and always have hope.

I had my first ocular migraine when I was 7,loss of sight complety for between 5 and 30 mins always left worse than right but has gotten better with age.I haven't had full vision loss in 3 years but I do get a rapid vertical movement in left eye from time to time.trippy the way people look at u when it happens.

i knew it. Im different !! Finally 030

I have this I just noticed when I was 11 so this is crazy

Speaking of Nystagmus, that video-editing....... If the camera's not moving, then the speaker is..... And if the speaker's not moving, then the camera is...... OR, if both are still, then the camera cuts-in and cuts-out in less than 1/10th of a second! ಠ____________ಠ

My daughter has this as well as kidney failure 😢

I have nystagmus and it’s really cool on Halloween to show ppl your “trick”

Oh mee god mine's not severe but I have noticed that my eyes randomly shake at times. I can also so it voluntarily. I'm glad that I found put what it's called.

Help. I teach ESL to adult immigrants and refugees. I just had a student with Nystagmus join my class. This student's needs are new to our program. I am looking for links to help me find information on how to present materials and what accommodations (think beyond iPad, laptop, monoscope) to provide this student. I will try to figure out how to use a laptop, tablet, and I just ordered a monoscope for my cell phone (saw that is someone's video)

I've got Nystagmus and Albinism. I remember completely being embarrassed having to put on sun cream or put on a hat when it's barley hot because I know I'll get burnt. People just threw it around and made jokes. I never understood all of this till I was in year 5. Whenever I write a lot, my eyes begin to get tired and I'll end up writing a lot slower than the rest of the class. Nobody really asked why my eyes moved, they just said something like "Are your eyes ok"? and I just said "Yeah, they're fine my mum just says they do that" because I was never confident enough to tell them what I had. Most people on the internet who aren't VI just don't believe you and try to fight about "How are you typing this if you can't see?"

I have nystagmus and I can see everything perfectly fine except for when I look to the sides

I have nystagmus brilliant description of living with it

I have nystagmus and is hard at school but I get really good help

My nephew born with nystagmus and its terrible doctors says there is no way to fix this so we tried different doctors but only hope is to wear glasses because without glasses his numbers of eyes increased now he is 8yr old and have 2.5 number goggles.

My son was born with nystagmus then was also diagnosis with Retinitus pigmotosa which is genetic in the family.

My 4 year old has nystagmus as well

i have meniere´s disease and when im worst or i have an episode of meniere´s my eyes do this same thing

My dauqhter who is 4 y.o. now has Nystaqmus too .. 😔

Seems like it might be rather common for people with albinism.

Mine dont shake that much now but my vision is terrible just knowing the down sides is not a nice thing to keep thinking of