Funny that I’m learning about my congenital Nystagmus at the grand old age of 51. From your idea I have just learnt why that som text is easier to read at a particular angle. My most used ‘visual aids’ is my iPad and phone because they allow me to conveniently zoom in on objects and text. The only time I have cursed my Nystagmus is when taking passport photos because I am always cross eyed.
Mine is congenital as well and most of my childhood was spent fighting off people that thought I had some disease that they could catch. As an adult, it has affected my employment searches since employers or coworkers are uncomfortable. I have a MA and use lots of magnification, but have spent most of my life living in poverty, because of attitudinal barriers.
Urgh you’re so right I need my eyes testing, my long range vision is getting worse but I keep putting off doing anything about it. I guess things are easier to ignore when it creeps on very gradually!
I’ve gotten yelled at by teacher before saying I wasn’t looking at T he board and they tell me I’m not paying attention. lol You got to love your head tilt.
I'm so thankful to have come across your videos. My 7-year-old son has both Optic Nerve Hypoplasia and a Nystagmus. We realized it right away after birth. People will stop us and ask what is wrong with his eyes, but because I'm around him all the time I don't even notice anymore. It can be kind of difficult to explain to people that have never heard of it before. I wish he was able to meet another person with his conditions. Thank you for sharing!
Ty. Slept poorly and awoke with nausea and my eyes would wobble whenever I changed the elevation of my head. I try to would focus my eyes on one place but my eyes would slowly veer to the right before snapping back. This kept repeating for several seconds. The is the first time I've experienced anything like this. I've had hardened cataracts from a young age.
Emily I don’t notice when your eyes wobble anymore either. I just noticed your perfectly applied eye makeup and beautiful blue eyes. You are wonderful 😘
I used to photograph a baby girl that had this disorder , of course all newborns have unstable eye movements and vision but hers became obvious as she grew and vision abilities increased . For her it was most difficult to follow or stay on objects
I have nystagmus since birth as well. My whole life I was put on spot because of it and I am so ashamed to look at people's eyes and explain it all over for hundred thousand times.
Hi Emily, thanks for this video and for sharing your story, we love it, we’ve been hearing you all afternoon today because Kristhian , my son who is 26 years old and Computer science graduate was born with SOD too, he has nystagmus also. We live in Miami Florida and subscribed to hear more stories, thanks again
It's funny when you mentioned that heat mask... i tend to sleep on my stomach and bury my face in my cat's belly. I never quite thought about it but yeah, now that I actually think about it it does help with my eyes!
Great video sweetie and if you don't mind there is something I've wonderd and I know you've sead in this video and in others that your eyes wobble more wen your stressed but how about wen your happy or excited
I was born with nystagmus too, which was partly corrected in a surgery when i was few months old (with other eye conditions)... Today I don't feel it very much, usually only when I try to look to my sides (left/right) or when I want to watch TV while lying on bed… and I also tilt my head to the left (and sometimes up) to read better
I have nystagmus and it makes my vision pretty bad. I know that you can get a guide dog for nystagmus in the UK but are you allowed to get a guide dog for nystagmus in the US?
@@ecologist_to_be I woke up one morning with a horizontal nystagmus. I've always had a history of migraines, and yet this came on without any pain or anything. It's mild, like yours was, and this is now 4 months with it for me. If you don't mind me asking, how long did yours last?
Steven K. Mine showed up randomly as well and has been getting progressively worse over the last few years. Doctors can’t find a cause and I am very scared because it just keeps getting worse. Did you ever figure yours out?
Funny that I’m learning about my congenital Nystagmus at the grand old age of 51. From your idea I have just learnt why that som text is easier to read at a particular angle. My most used ‘visual aids’ is my iPad and phone because they allow me to conveniently zoom in on objects and text. The only time I have cursed my Nystagmus is when taking passport photos because I am always cross eyed.
Mine is congenital as well and most of my childhood was spent fighting off people that thought I had some disease that they could catch. As an adult, it has affected my employment searches since employers or coworkers are uncomfortable. I have a MA and use lots of magnification, but have spent most of my life living in poverty, because of attitudinal barriers.
Urgh you’re so right I need my eyes testing, my long range vision is getting worse but I keep putting off doing anything about it. I guess things are easier to ignore when it creeps on very gradually!
I'm watching your nystagmus-themed video with my head turned to the right and with my left eye closed- my favorite null point!
I’ve gotten yelled at by teacher before saying I wasn’t looking at
T he board and they tell me I’m not paying attention. lol You got to love your head tilt.
Urg teachers! So many of my teachers at primary school believed I was lying about my sight and that my mum was just putting "ideas" into my head.
I have this too people every one asks why are your eyes shaking and I'm like...
I'm so thankful to have come across your videos. My 7-year-old son has both Optic Nerve Hypoplasia and a Nystagmus. We realized it right away after birth. People will stop us and ask what is wrong with his eyes, but because I'm around him all the time I don't even notice anymore. It can be kind of difficult to explain to people that have never heard of it before. I wish he was able to meet another person with his conditions. Thank you for sharing!
Late to the party but thank you Emily, so much x
Ty. Slept poorly and awoke with nausea and my eyes would wobble whenever I changed the elevation of my head. I try to would focus my eyes on one place but my eyes would slowly veer to the right before snapping back. This kept repeating for several seconds. The is the first time I've experienced anything like this. I've had hardened cataracts from a young age.
Emily I don’t notice when your eyes wobble anymore either. I just noticed your perfectly applied eye makeup and beautiful blue eyes.
You are wonderful 😘
I used to photograph a baby girl that had this disorder , of course all newborns have unstable eye movements and vision but hers became obvious as she grew and vision abilities increased . For her it was most difficult to follow or stay on objects
I have nystagmus since birth as well. My whole life I was put on spot because of it and I am so ashamed to look at people's eyes and explain it all over for hundred thousand times.
Hi Emily, thanks for this video and for sharing your story, we love it, we’ve been hearing you all afternoon today because Kristhian , my son who is 26 years old and Computer science graduate was born with SOD too, he has nystagmus also. We live in Miami Florida and subscribed to hear more stories, thanks again
I was also born with ONH and I have congenital nystagmus. I tilt my head to the right. Mine is horizontal nystagmus.
You are lovely 🙏 thanks for the info
Great set of informative videos Emily, and thank you so much for giving my abseil a plug in the description, that's very kind of you! 😊
Thats okay! Good luck! 👏🏻
It's funny when you mentioned that heat mask... i tend to sleep on my stomach and bury my face in my cat's belly. I never quite thought about it but yeah, now that I actually think about it it does help with my eyes!
Great video, didn't know much about nystagmus other than all people with albinism have the condition. Watching from London UK.
I can relate to having issues with balance, I have Dyspraxia.
Thanks for watching!
Thanks for more info.xx
Thank you for the knowledge
Great video sweetie and if you don't mind there is something I've wonderd and I know you've sead in this video and in others that your eyes wobble more wen your stressed but how about wen your happy or excited
It’s so funny that I can’t see you eyes wobble because mine do too!
I have congenital nystagmus but I don’t have any other eye conditions. As far as we know my nystagmus was a spauntanious mutation
Such an informative video xx
Life of a Blind Girl thank you x
I have the exact thing I have shaking eyes
I grew up with a mom and 2 brothers that have nystagmus and when they got mad at me their eyes stopped moving.
My son has the same thing as yourself. ONH and Nystagmus. As well as insipidus diabetes and hypo thyroid
Warm wishes to you and to him x
thumbs up hun thank u for sharing 🤗xx
Thank you x
Where can I purchase the eye mask because my daughter has the same condition
It is crazy because nystagmus has I guess it’s own speed doesn’t it ? But I’ve noticed if you focus on something to long it really acts up
Lovely video 😊
Love u Emily, thanks for this video and it was really interesting xxx ❤️❤️
Aww thanks x
I have had it for 50 years scenes birth
When I was a child children said me how much these I said to them that is two , they were tell me are you can see 😅
I was born with nystagmus too, which was partly corrected in a surgery when i was few months old (with other eye conditions)... Today I don't feel it very much, usually only when I try to look to my sides (left/right) or when I want to watch TV while lying on bed… and I also tilt my head to the left (and sometimes up) to read better
talu890 same
I have nystagmus and it makes my vision pretty bad. I know that you can get a guide dog for nystagmus in the UK but are you allowed to get a guide dog for nystagmus in the US?
Paige & Madi I live in the US and I have nystagmus too and my vision is 20/150 but no you don’t get a guide dog for it
@@jxt00 oh ok thank you
Yes you can though. It is just a long process.
I have this too, can I communicate with you?
I have a facebook page which you are welcome to contact me on if that is any help to you?
I used to have a mild version of this but now it has cured itself supposedly.
I used to get migraines due to mine that's why they diagnosed it
@@ecologist_to_be I woke up one morning with a horizontal nystagmus. I've always had a history of migraines, and yet this came on without any pain or anything. It's mild, like yours was, and this is now 4 months with it for me. If you don't mind me asking, how long did yours last?
Steven K. Mine showed up randomly as well and has been getting progressively worse over the last few years. Doctors can’t find a cause and I am very scared because it just keeps getting worse. Did you ever figure yours out?
@@muffin24310 has your nystagmus improved at all? Sending love xx