Thank you so much for your comment.. We are at the beginning in the 504/IEP process. I plan to use this in our initial meetings. Any more info on school help would be appreciated.
I wish I could show this to all the teachers who bullied me in school cause I said I couldn’t see certain things, I still remember all of my classmates laughing at my teacher’s jokes about the stuff I couldn’t see
Hi, I am from Germany and therefore never heard the term "IEP". What is it? Is it a school subject. I was born with nystagmus myself and my vision has already degrated to 20% at the my current age of 32 but I am studying at an "University of Applied science" and participate in their network for Inclusion.
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 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!
Had it for 84 years. Mercilessly bullied at school not only by the kids but some teachers as well. Always having to tell people no I’m not shaking my head because I don’t agree with you. But through all that I had a beautiful wife two wonderful kids and now 5 grandkids. Unfortunately it’s something that isn’t talked about in the general public.
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 so sorry that you are feeling like this and experiencing life this way. I hope you can get in touch with other people that understand what you are going through.
only seeing your comment now Alot of the time i feel the same way, hope you are doing ok. Every day can be a ba##ard of a struggle especially in the good weather
I know that feeling, it takes me so long to order at fast food places because I can't see the menus. And at restaurants I have to get my face super close to the menu and I always look stupid
To any of you feeling that way, we're here for you. I understand how you feel mate. Why me? How am I going to do this, that? Tell you what. Fuck all that. We understand and feel things that some people will never get to feel. That's what makes us stronger. I had nystagmus from birth, my parents very wisely didn't tell me about it but I managed to research and find out when I was 13. It was devastating at first knowing that I will never be that guy doing 120 on the freeway with my windows open with the wind on my face, but then I realized that Nystagmus gave me things that I would have never known existed. It all depends on how you look at it. I believe you can control nystagmus, instead of letting it control you. If you need anything, you can always message me mate.
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 😢😢😢
Sir I have also congenital nystagmus in both eye with high myopiya ,low vision with left squint eye with astigmatism my life also very difficult my age is 23 unable get job because I cant able to see computer due to nystagmus
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.
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!
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
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....
loved how different perspectives were shown! I have been in college, I am an artist, I edit videos for UA-cam, 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.
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.
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.
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.
I was born with nystagmus and have never really been bothered by it as I have near-perfect vision except for when trying to focus on certain points in the dark or when I´m really stressed. I can easily drive a car and the disease hasn't really affected me in any way except that my head sometimes tilts to the right. I´m in college now and just find it a cool party trick to be able to trigger it at will and people just find it interesting. Seeing people with much more severe cases makes me realise how lucky I was not being born with a severe case
Well it is very related to R.E.M. Sleep. When i get tired it activates see i got many types of it but it stops after a lucid dream because i am always awake in those dreams and it makes it so my R.E.M. sleep stop
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!!!
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.
Literally crying watching this! I am 33 with acquired nistagmus and can’t drive because of it. Glasses have not been able to help me. I am scheduling an appointment with a low vision specialist and praying he can help me. I dream of driving one day and not having to depend on others.
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!
ExMachina inap Ikr I was watching this and I was really confused and then I found your comment and ik this sounds really weird but I suddenly remembered how I've got voluntary Nystagmus!
may I ask how you got nystagmus and how you see now compared to before? I am curious because I was born with it and therefore don't know how I may have "seen" without it. My current eyesight is at 20 how much is yours?
@@nicolek5914 so my nystagmus just sort of happened one day , ĺike I wasn't born with it it's acquired ì believe is the term and my eye sight is ok as long as I take my medicine it's called baclofen but sometimes it can wear off if like I spin in a circle doesn't happen often lol but sometimes at my job I have to (Amazon)and idk what my number is it's been a while since I've seen Dr's for it
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.
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
This is crazy to see people actually relate to the things I go through everyday. I truly feel for that little girl too because going through schooling was absolute hell with all the bullies
same here am 22 now i hate it i dont hate the fact i cant see very well i come to terms with that a long time ago the fact we will never drive and stuff but if i could just stop my eyes from shacking i would be 90% better its the 1st thing people look at :( dont help with the ladies lol i had a gf for 5 years like and i have a lovely lil girl :) am on here looking to see if there is any treatment at all
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
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.
Same I have voluntary nystagmus, and honestly I really wonder how people with nystagmus are even able to do ‘normal’ stuff every day. It’s basically like having really bad eyesight and you’re just stuck with it
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 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.
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.
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 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.
i never got bullied for it just the typical boys will be boys stuff am 22 now and i hate it i cant look people in the eye and it gives me bad social anxiety and has destroyed my confidence 1st thing i think of when i talk to a girl is have they noticed it
I have it it doesnt really affect me at all but i do get names thrown my way sometime like why do ur eyes move round all the time, can u c i always say yes the thing thats affected me that i wont be able to drive
im the same as you guys but in school i made my disability an advantage that im different and im better than you ......and every one believed me . ive never let any one or any thing stop me from reaching my goals ....... and you all should do the same too......
the other thing is .... i want to to a surgery . i hope it makes my vision better so i can have my driving license. if you guys have any recommendation please let me know .... thanks
my son had surgery and it helped a LOT. the only issue he has is the surgery left small slit scars and occasionally his eyes hurt because the scars are slightly raised and rub a but so he uses eye lubricant when it starts to hurt. definitely recommend the surgery though.
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
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)
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.
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 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?
Me also same problem I am from india in India no one know Bout nystagmus except doctors ....my life is worse I am not able to play not able to drive 24 hours at home ....plz contact me if u can
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.
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
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.
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.
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!
It might be related to R.E.M. Sleep it turns on when im sleepy when i have dreams it goes off after i wake up and when i put dark shirt on my eyes. It relates to the back of your head and the long optic nerves connected to it. The cerrebellum controls nystagmus i think
@@muhammetkalayc663 That's pretty interesting. Do you have remedies for the movement? Like exercises? Seems to be work at a natural level. I can stun, or stop it with practice. I find that eye shape, size and position tie in to an extent.
@@ciaragarrity6425 noo how can you stop the movement can you recommend me your exercises, maybe you've seen from a video if you, you can send me to linkk
@@muhammetkalayc663 well i dont have a video but i do have a subreddit subreddit: Eyeshakers www.reddit.com/r/Eyeshakers/ Several people could help in the reddit. everyone has their own little way of keeping their eyes at bay. Anything else?
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!
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.
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.
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.
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.
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.
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...
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 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
I have nystagmus but it's not too bad. I don't mind people asking about it. It only effects me when I need to read menus I always ask my friend what's on them, but other than that I don't really think about it. Now I've relized that I love acting tho and I'm afriad I won't get any parts because of it. I know this is kinda dumb and I'm still pretty young (13). Does anyone know any famous actors with nystagmus?
lol i have voluntary nystagmus and i dont see like that all i see when i shake my eyes is just the same but its moving rapidly not blurry though i cant read when i do nystagmus
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.
me to 😢
Thank you so much for your comment.. We are at the beginning in the 504/IEP process. I plan to use this in our initial meetings. Any more info on school help would be appreciated.
I wish I could show this to all the teachers who bullied me in school cause I said I couldn’t see certain things, I still remember all of my classmates laughing at my teacher’s jokes about the stuff I couldn’t see
Hi, I am from Germany and therefore never heard the term "IEP".
What is it? Is it a school subject.
I was born with nystagmus myself and my vision has already degrated to 20% at the my current age of 32 but I am studying at an "University of Applied science" and participate in their network for Inclusion.
Have you read about the Bad Dűrrenberg Shaman? Very interesting
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.
valeforXD hey I have nystagmus and I'm starting a podcast and I'd love to talk to someone else that has it. Would you be interested in being on?
It's amazing to know that people understand me
Same
I have too I can't wear glasses at all I can't read small print very good. I never meet anyone with it.
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!
Had it for 84 years. Mercilessly bullied at school not only by the kids but some teachers as well. Always having to tell people no I’m not shaking my head because I don’t agree with you. But through all that I had a beautiful wife two wonderful kids and now 5 grandkids. Unfortunately it’s something that isn’t talked about in the general public.
Thank you for this amazing video. I'm in tears. My baby has nystagmus and this shed some light
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 so sorry that you are feeling like this and experiencing life this way. I hope you can get in touch with other people that understand what you are going through.
Your comment was 2 years ago but I hope you are doing well and finding happiness is possible too xx
only seeing your comment now Alot of the time i feel the same way, hope you are doing ok. Every day can be a ba##ard of a struggle especially in the good weather
I know that feeling, it takes me so long to order at fast food places because I can't see the menus. And at restaurants I have to get my face super close to the menu and I always look stupid
To any of you feeling that way, we're here for you. I understand how you feel mate. Why me? How am I going to do this, that? Tell you what. Fuck all that. We understand and feel things that some people will never get to feel. That's what makes us stronger. I had nystagmus from birth, my parents very wisely didn't tell me about it but I managed to research and find out when I was 13. It was devastating at first knowing that I will never be that guy doing 120 on the freeway with my windows open with the wind on my face, but then I realized that Nystagmus gave me things that I would have never known existed. It all depends on how you look at it. I believe you can control nystagmus, instead of letting it control you. If you need anything, you can always message me mate.
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 😢😢😢
Do most people with albinism have this condition ?
Sir I have also congenital nystagmus in both eye with high myopiya ,low vision with left squint eye with astigmatism my life also very difficult my age is 23 unable get job because I cant able to see computer due to nystagmus
@@mvasudev1166 hi for me also..
I'm only 11 and it makes me feel happy when I see people with this
do you have it? I'm also 11 I have it,
I am 22 and i have by birth
I have nystmus to and its nice knowing other people are smaller to me (also have the same name!)
I'm 38 years old. and I'm really just now learning about nystagmus I've had it my whole life.
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.
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.
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!
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
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....
Brilliant video. Thank you Richard and the Nystagmus network team!
loved how different perspectives were shown! I have been in college, I am an artist, I edit videos for UA-cam, 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.
+JD Dalton (Samivaya) you are lucky.
Struggled my whole life with this .. in so many ways
Plz contact I also sacrifice lot of ...
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.
Bethany Marie SAME
Me too but also sometimes my eyes move randomly when im reading
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.
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.
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
Same here.
Same
Same
Thank you guys for making this video. It feels good that I am not alone
I was born with nystagmus and have never really been bothered by it as I have near-perfect vision except for when trying to focus on certain points in the dark or when I´m really stressed. I can easily drive a car and the disease hasn't really affected me in any way except that my head sometimes tilts to the right. I´m in college now and just find it a cool party trick to be able to trigger it at will and people just find it interesting. Seeing people with much more severe cases makes me realise how lucky I was not being born with a severe case
I have nystagmus and I barely notice any movement or blur really, i guess i'm used to it?
ThirdGenNerd me to
Well it is very related to R.E.M. Sleep. When i get tired it activates see i got many types of it but it stops after a lucid dream because i am always awake in those dreams and it makes it so my R.E.M. sleep stop
I can control my nystagmus so I’m not sure if it’s nystagmus
@@israelgonzalez5116 too
Me to its geting beter and beter
Nystagmus to me happens when i am mad angry
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!!!
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.
Thank you for helping to inform people and to raise understanding about Nystagmus.
Literally crying watching this! I am 33 with acquired nistagmus and can’t drive because of it. Glasses have not been able to help me. I am scheduling an appointment with a low vision specialist and praying he can help me. I dream of driving one day and not having to depend on others.
Oh my Lord I'm not alone ;~;
Same, i thought i was alone too:/
Me too
I have it :( makes my life unpleasant
i mean i think i have it. cus my eyes just twitch/glitch at random times..is that it or?
Can we (nystagmus) wear contact lens?
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!
Some Sonance Didn’t realise it’s the fuckin Disability olympics
@@jamie8265 stfu u bellend
I need my friends to watch this
Because they always ask me
These questions
Eyy, I have voluntary nystagmus and I creep people out with it. 10/10 superpower.
vastowen456 Yeah!
I have nystagmus as well and I scare people😏😏
Oh my gosh, same! I love scaring my friends with it and creeping them out at random times.
Same
@@rubyfrancis4519 you are ew
I feel very blessed to have voluntary Nystagmus. It's even a crowd pleaser at the parties!
ExMachina inap omg ikr! Its the coolest thing to have the ability to shake our eyes and show our friends how awesome we are!
Same!
ExMachina inap Ikr I was watching this and I was really confused and then I found your comment and ik this sounds really weird but I suddenly remembered how I've got voluntary Nystagmus!
4:28-4:38= SO TRUE. I have nystagmus, yet can hear & smell things most others can't.
Yeeees that is all right it is my case
Yes right this is also in my case
Nystagmus is about eyes, not your smelly nose and weird ears.
My sense of smell is crazy good
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
may I ask how you got nystagmus and how you see now compared to before?
I am curious because I was born with it and therefore don't know how I may have "seen" without it. My current eyesight is at 20 how much is yours?
@@nicolek5914 so my nystagmus just sort of happened one day , ĺike I wasn't born with it it's acquired ì believe is the term and my eye sight is ok as long as I take my medicine it's called baclofen but sometimes it can wear off if like I spin in a circle doesn't happen often lol but sometimes at my job I have to (Amazon)and idk what my number is it's been a while since I've seen Dr's for it
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.
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
This is crazy to see people actually relate to the things I go through everyday. I truly feel for that little girl too because going through schooling was absolute hell with all the bullies
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 but I cannot look upwards into people's eyes and it is worse because I'm small
It is quite crippling in actual fact, I was born with it too.
same here am 22 now i hate it i dont hate the fact i cant see very well i come to terms with that a long time ago the fact we will never drive and stuff but if i could just stop my eyes from shacking i would be 90% better its the 1st thing people look at :( dont help with the ladies lol i had a gf for 5 years like and i have a lovely lil girl :) am on here looking to see if there is any treatment at all
As someone with voluntary nystagmus, I can only imagine how terrible it is for this to just happen.
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
Amazing video. Watching from London.
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.
How can you type and watch videos like this? I feel practically blind.
Same I have voluntary nystagmus, and honestly I really wonder how people with nystagmus are even able to do ‘normal’ stuff every day. It’s basically like having really bad eyesight and you’re just stuck with it
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.
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
31 years I have been alone ❤️ not today 🙏🏻
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.
Masuma Bibi same with me
Thankyou for this education.x
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.
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.”
Yeah I can totally relate as I have done this in my school days as well
Ok but I’m convinced the reason I didn’t make as many friends as I’d like in uni was because I was the only one sitting in the front row😂
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.
I can't sleep with it
i never got bullied for it just the typical boys will be boys stuff am 22 now and i hate it i cant look people in the eye and it gives me bad social anxiety and has destroyed my confidence 1st thing i think of when i talk to a girl is have they noticed it
I have it it doesnt really affect me at all but i do get names thrown my way sometime like why do ur eyes move round all the time, can u c i always say yes the thing thats affected me that i wont be able to drive
BiscuitsXL I feel your pain I can never look people in the eye unless I'm close with them
ive got nystagmus too and everyone on school bully me with it..
+Cilke Van Der Boor me too. it really sucks when they make fun of our disability
im the same as you guys but in school i made my disability an advantage that im different and im better than you ......and every one believed me . ive never let any one or any thing stop me from reaching my goals ....... and you all should do the same too......
the other thing is .... i want to to a surgery . i hope it makes my vision better so i can have my driving license. if you guys have any recommendation please let me know .... thanks
my son had surgery and it helped a LOT. the only issue he has is the surgery left small slit scars and occasionally his eyes hurt because the scars are slightly raised and rub a but so he uses eye lubricant when it starts to hurt. definitely recommend the surgery though.
Stay Strong Cilke!!
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
This was so great! And very relatable!
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)
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.
I have nystagmus and sometimes I would get bullied but I never let it get to 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 it too :) great video to help explain it to people who know you and want to understand 😃
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?
Me also same problem I am from india in India no one know Bout nystagmus except doctors ....my life is worse I am not able to play not able to drive 24 hours at home ....plz contact me if u can
i have this but it's completely under my control i can only imagine how bad it would be if i could not.
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.
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
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.
This was a strange Orange is the New Black episode....
(for real though it's great to see information about this professionally produced!)
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.
I am 11 and I have had it from birth
Amelia Grex same
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!
I have nystagmus I've found it really hard starting high school xx 💖
It might be related to R.E.M. Sleep it turns on when im sleepy when i have dreams it goes off after i wake up and when i put dark shirt on my eyes. It relates to the back of your head and the long optic nerves connected to it. The cerrebellum controls nystagmus i think
I dont think like you whenever i wake up, i have no vibrate in my eyes but then it starts to tire and vibrations start
@@muhammetkalayc663 That's pretty interesting. Do you have remedies for the movement? Like exercises? Seems to be work at a natural level. I can stun, or stop it with practice. I find that eye shape, size and position tie in to an extent.
@@ciaragarrity6425 noo how can you stop the movement can you recommend me your exercises, maybe you've seen from a video if you, you can send me to linkk
@@ciaragarrity6425 hey are you there
@@muhammetkalayc663 well i dont have a video but i do have a subreddit
subreddit: Eyeshakers
www.reddit.com/r/Eyeshakers/
Several people could help in the reddit.
everyone has their own little way of keeping their eyes at bay. Anything else?
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!
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
I have also nystagmus but my head is in motion to control my eye ball
Wait a minute I can do this with my eyes, feels hard to focus
What a great video and interesting insight into nystagmus. #wobblywednesday
🤣😁
My little boy is 17 months old and has this. Both his eyes shake. I worry
For
Him and feel sad
For
Him
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.
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.
Can you please help us about surgery performed on your eyes for the nystagmus , like more info about where to make the surgery and by what doctors ,
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.
Voluntary nystagmus people assemble!
Abhishek Michael Roger that I have it too we should be yt friends :D
I have nystagmus and it’s really cool on Halloween to show ppl your “trick”
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.
Thank you
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.
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...
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 meniere´s disease and when im worst or i have an episode of meniere´s my eyes do this same thing
I have Nystgamus How will it be treated pls 🙏tale
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
Good information a bout nystagmus am to more information
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
i knew it. Im different !! Finally 030
I have nystagmus but it's not too bad. I don't mind people asking about it. It only effects me when I need to read menus I always ask my friend what's on them, but other than that I don't really think about it. Now I've relized that I love acting tho and I'm afriad I won't get any parts because of it. I know this is kinda dumb and I'm still pretty young (13). Does anyone know any famous actors with nystagmus?
lol i have voluntary nystagmus and i dont see like that all i see when i shake my eyes is just the same but its moving rapidly not blurry though i cant read when i do nystagmus