What is Optic Nerve Hypoplasia?: Why I’m Registered Blind | Fashioneyesta

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👁 Open Me 👁
Hi Everyone!
Today is the first in a three part series I've made for National Eye Health Week about different aspects of my visual impairment.
Todays video is going to be focusing on my eye condition known as Optic Nerve Hypoplasia.
Tuesdays video is going to be talking about Nystagmus and Wednesdays video is going to be talking about why I don't wear glasses.
Don't forget this week is National Eye Health Week, so if you haven't had your eyes tested in the last 2 years head on down to your local opticians and get them tested.
Be sure to like, comment and subscribe if you haven't.
⬇️ Links ⬇️
RNIB Article on Septo Optic Dysplasia: www.rnib.org.u...
National Eye Health Week: www.visionmatte...
Septo Optic Dysplasia Video: • Living with Septo Opti...
More information on Optic Nerve Hypoplasia: www.gosh.nhs.u...
⬇️ Social Links ⬇️
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Closed Captions
I am working on having more of my videos closed captioned and will be sure to add them as soon as possible.
But, if you would like to contribute closed captions for me in exchange for a shoutout on my channel and social media it would be greatly appreciated.
Link to contribute Closed Captions to one of my videos: www.youtube.com...
Huge thanks to Glen from Well Eye Never for adding subtitles to my videos.
Check out Glen's channel: / @welleyenever
Disclaimer: This video is not sponsored.

Опубликовано:

13 сен 2024

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Комментарии : 112

@slconstable 5 месяцев назад

I have congenital ONH, strabismus and heterochromia in my right eye. I was also born with a cataract, removed in my 20’s. My blindness has always been a problem for other people. Funny enough, when I tell people I’m blind in my right eye, they speak louder. Cracks me up.

@iSomebodyWhite 5 лет назад

My 2 yo daughter Luna has ONH and Nystagmus and uses a cane. It’s great to see people with the same conditions achieving so much, gives me hope for my little girl.

@Sophiaaxoo 5 лет назад

You might not see this, But I have optic nerve hypoplaspoa .. I love seeing I'm not the only one suffering from this. Its been so hard growing up with this

@fashioneyesta 5 лет назад

I know what you mean, when I was growing up I felt so isolated because I didn't know anyone else with the condition. But now as its becoming more well known I've met lots of people online with the same condition ❤️

@chrissysworldtour Год назад

Hi there! My daughter (almost 14 now) has ONH/SOD, nystagmus, severe cognitive impairment, is nonverbal, and is soon to be diagnosed with autism and potentially Tourette’s (based on recent specialist’s recommendations.) I’m so glad that you are creating awareness and describing ONH! So many parents can have anxiety on new diagnoses. I just want to say that, regardless of diagnosis and ‘abilities’, we can all do so many things in this life! My daughter taught herself how to skateboard, is in Girl Scouts, she loves to model, travel, go to the movies, and go to musicals! We have so much fun together!

@katiekinsss Год назад

My daughter is 7 and has the same!

@mndlgh 5 лет назад

My sweet girl who is 11months old, has ONH. She is completely blind in her right eye, but they said she has full vision in her left! She was diagnosed at 3 weeks old. Thank you for the video and for the info!

@jessicacatsburg8652 5 лет назад

mndlgh I have the same condition, and I’m completely blind in my right eye but have have full vision in my left - the same as your little one. It shouldn’t stop her from living her life to the fullest. ❤️

@mndlgh 5 лет назад

Jessica Russell Thank you for commenting! I do worry about her and her future a lot. She’s such a sweet baby though, and sooo determined to do EVERYTHING her twin sister does. 😄

@rachelhenriksen3180 5 лет назад

@@mndlgh did they have your little girl do an MRI? We just saw an ophthalmologist and I was told my 7 month old daughter has onh in both eyes and we have been sent to get an MRI. She doesn't seem to respond to light either.

@mndlgh 5 лет назад

Rachel Henriksen She has has 2 MRIs .. the first at 4 weeks old showed ONH in both eyes, but the second at 6 months old showed that she actually only has it in one! Her ophthalmologist confirmed she is able to see out of one of her eyes. It’s hard to see your little one go through all of this, good luck with her MRI! 💓

@ashleyfuentes4730 Месяц назад

I have ONH and legally blind in my right eye, glasses don’t help. But thank God I was able to get a drivers license. It was a struggle growing up with this disability. It’s great to know I’m not alone! ❤

@aimesfin05 6 лет назад

I have the same condition and I am actually in a process of getting a guide dog and your videos are so helpful and comforting , you are such a good person and role model 💖

@fashioneyesta 6 лет назад

Thank you so much! And the best of luck with getting a guide dog x

@jadegoulding1241 5 лет назад

Did you end up getting a guide dog? I’m in the process of trying to get one too and I’m quite nervous about it

@theavocado8354 4 года назад

Saaammmmeeeee

@fangzhouchen7731 4 года назад

How do u post this comment?

@aimesfin05 4 года назад

Jade Goulding still in the process

@kaylarose9446 3 года назад

My 4 year old has bilateral ONH with nystagmus. She is legally blind, low vision. She was diagnosed at 3 months, confirmed at 5 months with an MRI. I have the hardest time explaining to people why glasses won't help her. thank you for sharing this. YOU ARE AMAZING, AND BEAUTIFUL.

@luisjohnson1037 2 года назад

My daughter was recently diagnosed with ONH and I’m currently going through a huge learning curve on this topic. Thank you for doing this video. Extremely helpful and great to see someone who has achieved with the same condition.

@tempora1086 3 года назад

As a 12 year old with ONH seeing this video explain things and seeing others with it makes me feel better knowing I'm not alone!

@andreagarciarabi7223 4 года назад

I have ONH too, it can get hard to live with this condition but seeing that there are other people who struggle and overcome it its truly inspiring.

@lifeofablindgirl8698 6 лет назад

I don't have the same condition but can relate to a lot of what you said about not looking blind/visually impaired. Fab video as always x

@s.owen_6281 6 лет назад

When I was born ('93) Septo Optic Dysplasia was SO unheard of. I was born with it too, blind in my left eye, visually impaired in my right. Also have nystagmus. Also have epilepsy but unsure as to whether that's related. I seem to spend my life explaining to people (even medical professionals) what Septo Optic Dysplasia is! Only person I've ever met who'd heard of it was a student doctor years ago 😂 thanks for making me feel like I'm not the only person on the planet with SOD! 🙋😂

@fashioneyesta 6 лет назад

Aww thank you! I know what you mean its so cool when you finally meet another person with the same condition 👋🏻

@fashioneyesta 6 лет назад

Also apparently according to my endocrinologist, people with SOD can also have epilepsy so it may well be related.

@artisticallylys279 5 лет назад

I have SOD too, hiya!

@Octo_Chara 4 года назад

I also have ONH. I have very low vision in my left eye and I have good vision in my right eye but it’s not 20/20.

@TheCursed0ne01 3 года назад

literally me rn

@michellegliko779 2 года назад

I'm a nursing student and came across a patient with ONH and nystagmus. This was very straight forward and informative, thank you for helping me help others!

@vladislava511 10 месяцев назад

Thank you for being so clear in your way of communicating, the 7 minutes went down easily :D

@ecologist_to_be 6 лет назад

I find it annoying that people say you don't look visually impaired...How do they know what it looks like? I have issues with my hearing and vision. Perfectly healthy eyes and ears, but been told my brain doesn't process things very well. 🤦🏻‍♀️ Mine is made worse by fatigue so since getting CFS/ME it had become more difficult to cope with. lol Supposedly you can get vision and auditory training but due to CFS/ME I can't have it, so just learning how to put up with it basically. lol

@MontrellTellaTruth Месяц назад

I have optic nerve hypoplasia and I'm legally blind and yes I always have had it aswell!!!

@luke6645 5 лет назад

I've got ONH, it's fucken shit cos people don't realize I have something wrong with me and they expect me to be as capable as someone who's eyes are perfect, so i'm always getting treated badly by people.

@MrDubstep21 4 года назад

My Son has bilateral ONH and this was so helpful in understanding him better. I would love if you could make videos about your journey through school age to becoming an adult. I always wonder how he is going to be independent and how I can help him succeed.

@asecretcourtofcrowsandcloc4084 6 лет назад

Great! Emily. I love that analogy.

@fashioneyesta 6 лет назад

Thanks!

@raynex86 5 лет назад

I was diagnosed with ONH at the age of 26. I had an accident at 11 months old and my mum was told that I had detached my retina in my left eye. Now fast forward to the age of 26 I was seen by a headache specialist and was told I had ONH. Now a year ago I was told I could have SOD as they saw that my septum pellucidum was absent in my MRI. I'm now 33 with SOD diagnosis with no hormone issues as of yet.

@abbyrose8821 4 года назад

I have the exact same thing you do! It’s insane what people say to you when you look different. People have no idea how we live daily!

@BBBCanada1 9 месяцев назад

Very informative. Nicely explained. 💙

@danielledewitt1 6 лет назад

I may be visually impaired but guesse what. I made the darts team this year. We are the greyhound ladies team, our home games are in the greyhound pub in boothestown. I get some good scores.

@fashioneyesta 6 лет назад

Thats awesome!

@danielledewitt1 6 лет назад

Fashioneyesta I know. Only my cousin who is the team captain was saying get the top of the league teams out of the way then I play most of the game but somebody else do my last double. So I said whoa hold on at least give me a chance, I want to be treated equally. I know I can get the last doubles because I have done several times already.

@BNB13930 5 лет назад

My one year old has SOD. I truly enjoyed this video❤️

@theavocado8354 4 года назад

I used to get bullied for this I have optic nerve hypoplasia but in one eye and I need to wear glasses to keep that eye straight. It’s good that I’m not alone!

@maryellenchavez7022 8 месяцев назад

Thank you so much!!!

@elliptix9344 2 года назад

I have ONH in one eye, and it sucks even though I still have vision in one of my eyes

@sarahmeadows9464 6 лет назад

I have optic nerve hyperplasia and im blind in my right eye and have a stagma i struggle with roads stairs seen in the dark so i understand what u talking about my left i cant see short are long distance so it needs be in rhe middle but im happy that emily can explain it to others its hard to explain to peaple about the condision for sure

@fashioneyesta 6 лет назад

Its a complex condition, a lot of the time people get so confused by it so I thought it was time I made a video to explain it better

@ingridtomalin8275 5 лет назад

I have optic nerve drusen as an 18 year old, which is practically unheard of in younger people. It took so long for me to get diagnosed it really has been a struggle. I've been searching for a long time on any videos on drusen as I have been told that I have a very severe case. So I guess I'm just watching other videos about other optic never abnormalities😂

@hestia7638 5 лет назад

Omg same!!! On my right eye I can’t see that well but my right eye is a lazy eye. They did surgery twice and the second time it kinda helped. (They lifted up my eyelid.) I’m doing therapy for both of my eyes so my right eye can follow around and not go crossed sited. I ware glasses as well.

@theavocado8354 4 года назад

OMG SaMeeeeeee

@kaleenalettich5899 Год назад

Hello I have hypoplasia of the optic nerve as well and some of the things you said is what I have and I didn't know much about my disability so thank you for letting me understand

@kelviannaepperson3677 3 года назад

I was born with strabismus in both eyes and it wasn't until my 6th surgery until my doctor noticed that it was my nerves. Recently I was diagnosed with neuropathy and it has been affecting every part of my body. Not til yesterday my mom told me that I was born with nerve damage. I have cerebral palsy I'm able to walk but it's difficult and painful

@wishingheartsequestrian795 Год назад

Rachel I just have a optic nerve hyperplasia end learning, difficulty global development and delay

@mallorys.8066 4 года назад

I have glaucoma and it gets discouraging to be the only one who can’t drive and can’t see very well that I am around. Thanks for making videos and sharing your story!

@atricewarner5705 4 года назад

I have ONH and Nystagmus. We also have the same hair. Hi. Nice to meet you.

@jasmynpolitethebraillefana4179 2 года назад

I am visually impaired from glaucoma and my left eye is my worst eye. I am able to read large print and listen to audio to accommodate my vision. I am also learning Braille in case my vision gets worse. I also have nystagmus as well in my left eye.

@tamsynd613 5 лет назад

I have ONH, nystagmus and strabismus. I’m blind in my right eye but can see a slight amount of light and in my left eye I can see pretty well it’s only a little effort with the peripheral vision

@downeymorales9841 3 года назад

OMG! Hi, I finally have the name for my eye condition. Thankfully it is not so severe. Both of my eyes are woking just fine other than the problem seeing those far away from me. It is quite amazing that when I was still studying, I was using monoculars until college despite ni idea what this is. Your video was belpful in a way that I know I am not alone having this condition. Nevertheless, I dont see this as a handicap unless I am looking at the streetsigns and yeah I doubt I can drive. Lol

@aimesfin05 6 лет назад

I also am blind in my right eye and vi in my left and I have ey stagmus and no porifral vision xx

@nickzvidz8522 3 года назад

I have ONH as well. Support from the US

@clavesseptem7223 5 лет назад

I too have optic nerve hypoplasia. Cane trained in high school, still using the thing. Glasses of course, did zilch.

@CMOD130 3 года назад

Thanks for sharing! Great vid

@sophiearmstrong222 5 лет назад

Great explanation! Thanks for sharing :)

@etherealgamer6667 Год назад

Just found out my ONH is because my mother was young, on drugs, and I was a first born. I also just found out ONH causes nystagmus and autism, that explains a lot in my case.

@richardstone4675 6 лет назад

Great video and you look stunning as always xxx

@fashioneyesta 6 лет назад

Thank you x

@pcnerd494 Год назад

I have ONH my family and teachers handle it so well, everyone used to asked me why I don’t wear glasses as-well ( I am completely blind in my Left eye ) I also have nystagmus and had a surgery last year

@JuanAlcazar 6 лет назад

I can imagine how irritating it has to be to explain your condition to those who say that there doesn’t seem to be anything wrong with your vision.

@fashioneyesta 6 лет назад

I know, but I think most visually impaired people have that problem, people just don't understand that visually impaired people actually want to get on and live their lives

@jacquelinescourageousworld2438 3 года назад

@@fashioneyesta 💛❤️💛❤️💛❤️💛❤️ ❤️💛❤️💛❤️💛❤️💛 Love you Fashioneyesta and I was born with an eye disease called Retinopathy Of Prematurity and I believe I was born with an eye disease called Retinitis Pigmentosa. But honestly my eye doctor in Missouri has never seen that eye disease before in his life. 😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭

@edwinnewmaniii2092 3 года назад

Same, I have to explain my eye problems to teachers, and I’ll end up being away from the board because they forget. Or; “WHY DID YOU JUST RAM INTO ME?!” “Oh- I’m sorry, I couldn’t see you-“ “I was right there! In front of your Face!!” “You we’re on my right side, I’m blind there-“

@ancelcole4404 Год назад

I was born with it. Ive lived pretty much normal life

@mommysteve1314 Год назад

Hi! I’m 13 and I have ONH, and was diagnosed when I was really little. My left eye is fully functioning, other than nearsightedness, but my right eye I can only see out of my peripheral vision because of ONH, and it doesn’t really affect my daily life, and if you saw me, you would probably never know I had it. I feel that my left eye has sort of adapted to it

@SashikuChan 5 лет назад

I have ONH as well. I also have tunnel vision and lack of depth perception. I can see a little in my left eye, but the tunnel vision in that eye is much worse than in my right. So I can only see near the right side of my eye. My right eye isn't as bad but I still have to read things pretty close to my face.

@MistyDW41 4 года назад

Wanted to comment that I as well have ONH and Nystagmus.

@tudormiller8898 4 года назад

Hi! This video interesting. I have a neurological condition called Auditory Processing Disorder, which means there is a poor connection between the signals from my brain to my ears. We have more in common than I thought, poor balance and these disabilities.

@breanneelizabeth9938 3 года назад

I also have ONH and nystagmus

@toniedudley6108 6 лет назад

Lovely video x 😊

@fashioneyesta 6 лет назад

Thank you x

@dashaehall6426 5 лет назад

I have onh in my right eye too people are so shocked when I tell them I’m blind in one eye because you really can’t tell just by looking

@fashioneyesta 5 лет назад

I totally get that, it's very common with ONH

@edwinnewmaniii2092 3 года назад

I have ONH, and have had it since birth. I am completely blind in my right eye and loosing sight in my left. I’m only 11 and habe had over 12 different pairs of glasses since my eyes are constantly changing. I used to be able to make out shapes in the Right eye, but now I can’t. My eye also likes to move on it’s own and people think it looks weird so there’s some ways to make this worse for me. And since I can’t see, I’m bumping into people, animals, and objects constantly. Also the got ran over when a car whizzed by my right side while I was walking to my family’s car. (Yes, I did turn my head to look both ways before). WHY AM I CURSED LIKE THIS?!

@Jojosstuff6 4 года назад

Wow I have optic nerve hypoplasia. Where my right eye is totally blind and I have no depth perception. My eyes also move around. It’s like we have the same thing. Funny.

@BananaNana0606 5 лет назад

I suffer from optic nerve hypoplasia too. And. Nastig too I was born blind and gained some vision. (Just enough for me to see things. I am almost blind I. My right eye and only able to see shadows, and can only see shadows all around my left eye and can see certain distances out of the right bottom corner of my eye and towards the middle. Yeahhh. Pretty messed up. I get it a lot too. “You don’t look blind”. Ok and you don’t look human. Lol. I still bump things and hurt myself just because I have literally no vision out of the top bottom or left side of my eye. Just the middle and bottom right corner. It’s very weird. Doesn’t stop me from playing black ops 4 though !! Even though I’m terrible !

@dylansistrunk6602 Год назад

Does it get worse or better? My baby girl is 6 years old and I’m just curious. I hate it cause I want to see what she sees ya know?

@emilliem2992 5 лет назад

I have hypoplasia on my teeth so I've grown up without enamel and I have get cavities so easily it sucks

@alyseray4416 3 года назад

i’m blind in my right eye although i have about 5% vision

@Gamedaughter1 6 лет назад

I also have Optic Nerve Hypoplasia, I think I might have Septo but I've never been diagnosed as such. I do know when I was a senior in High school that Vocational Rehabilitation (Service in the U.S.) paid for my first visit to the gynecologist because I had never had a menstrual cycle and the justification for it was that it was somehow it was related to my vision problem. LOL Sorry if that was TMI.

@fashioneyesta 6 лет назад

You may have SOD (Septo Optic Dysplasia) as well people often to who have Optic Nerve Hypoplasia. I'd definitely suggest getting it looked into with an endocrinologist, people with the condition can have irregular or non existent periods. That isn't unheard of, don't worry about it being TMI periods are a part of life! There are lots of different things that you can have as a result of SOD issues with hormone production, immune system, hypoglycaemia, the list goes on. Theres a great organisation called the pituitary Foundation who have lots of useful recourses about the condition. They might also have some useful contacts of people you can get advice from from wherever you are in the world. I hope this helps x www.pituitary.org.uk

@Gamedaughter1 6 лет назад

Thank you, Emily, for all the information. I will definitely check into it.

@TABSProdcutions 4 года назад

I have optic nerve hypoplasia

@ethannabors9361 3 года назад

I have onh nystagmus it sucks but why people gotta be so mean i have been called everything and idk why but i hate cross eyed the most

@ramialjehani1948 6 лет назад

My daughter diagnosed with ONH shes only 3month now I want to know if there's any treatment to do to improve her sight , and what a life condition that we w'll going through

@fashioneyesta 6 лет назад

Hi there, I’m sorry to hear that, I know it may look tough now but trust me things will get better. There isn’t any known treatment for ONH, the only things you can do are ensure she has visual aids to make it easier to see things as she gets older. Speak to your local authorities sight loss Department’s or your hospitals sight loss advice team who will be able to give you more insight on where to go from here. There are lots of online forums for parents with ONH where you can also get advice and support.

@jwspedmuffin23 5 лет назад

Sounds like you'd be a good candidate for stem cell treatment. Also I only noticed ur eyes shake back and forth when you'd speak quickly. They were relaxed with slower calm statements.

@FORSH1000 5 лет назад

I have onh and am blind in my right eye.. have you ever looked into the stem cell surgery?

@angelx492 5 лет назад

I have this condition and I’m fully blind in my right eye from birth and I have been told that I should wear glasses but I rarely wear them tbh as i don’t feel any difference xx

@fashioneyesta 5 лет назад

I did try reading glasses when I was younger but because of my Nystagmus they just aggravated my eyesight to be honest, so I feel yah x

@maryfralick6789 4 года назад

Please message me. My 8 month old has this. I have questions.

@comedyworld4730 3 года назад

@Katie Chevalier Dear katie My daughter has diagnosed with ONH (bilateral). She has Nystamus also. She is now 2.5 years old. Can you suggest something that her condition could better as doctors suggested it is incurable.