What I Can and Can’t See with Optic Nerve Hypoplasia | Fashioneyesta
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- čas přidán 6. 06. 2024
- • Open Me! •
Hey Guys!
Today I'm answering one of my most asked questions "What Can You See?"
In todays video I'm talking about what I can see as someone who is legally registered blind (severely sight impaired) and how this impacts my daily life.
I also discuss my sight loss as someone with Septo Optic Dysplasia/ Optic Nerve Hypoplasia and Nystagmus.
👁What Are My Eye Conditions? 👁
Optic Nerve Hypoplasia: • What is Optic Nerve Hy...
Nystagmus: • What is Nystagmus? Why...
⬇️ Links ⬇️
Blog Post on the RNIB How I See Campaign: fashioneyesta.com/2016/08/03/...
Septo Optic Dysplasia Video: • Living with Septo Opti...
Talking Disability Playlist: • Disabled Villains | Fa...
⬇️ Social Links ⬇️
Blog: fashioneyesta.com
Twitter: / davisonem
Instagram: / fashioneyesta2012
Facebook: / fashioneyesta
Tumblr: www.tumblr.com/blog/fashioney...
Audioboom: audioboom.com/fashioneyesta
CZcams Channel: / fashioneyesta
Second Channel: / @fashioneyestaextra
Podcast Channel: www.fashionabilitychannel.com
Closed Captions
I am working on having more of my videos closed captioned and will be sure to add them as soon as possible; As I am working and studying for my Masters Degree my time is limited.
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: czcams.com/users/timedtext_cs_p...
Music
Nicolai Heidlas: Pacific Sun
This video is not sponsored.
I love how detailed you were about your vision loss, really fascinating and just goes to show blindness is not a one size fits all. It's the same with hearing loss, I always have to explain what hard of hearing means in my case because for me it's not the same as someone else
+Billy Riedel thank you 😀 I think that's the thing I wanted people to understand, that with sensory loss it's not all black and white. There are many grey areas surrounding disability.
Billy Riedel I have 2 sensory impairment, visual and hearing. Left ear is quite good but not perfect. Right ear profoundly deaf.
Ok I haven't even watched the entire video yet but I just yelled at my fiancé "Baaaabe I've just found someone who seems to have almost the exact same visual impairison as me!" Can't tell how happy I am to have found your channel
Aww! Thanks hun xx
Thank you for sharing Emily! I can definitely relate to so much of this (even though I have Bests, and my issue is loss of central vision, but do have peripheral vision). I love knowing how well other VIPs do life. You have described your situation so eloquently.
I just want to say thank you for your videos you have made my heart feel so much better!! my grandson is a 1yr old and has the same thing you do I love you so much for making your videos
the most relatable video on the internet, thank you so much!
I love your videos. You have such a great perspective and seem so empowered to conquer and solve issues. My daughter is only 3 years old and is totally blind. I hope she grows up to have a similar attitude. Please keep sharing.
Thank you so much for this video, my 1 year old has this diagnosis and your videos have given me a comfortable amout of understanding about how she is going to be effected, youve relieved some of this mammas stress for sure!
I enjoyed watching this video of yours explaining I think you can see because as someone who also has nystagmus, I come across these issues every single day.
From a step mum of a child with septo optic dysplasia. Thank you. I know everybody is different but living in a small country any information about our daughters condition is gratefully accepted. You are amazing.
These videos and your perspective is so interesting I will be using these with my students at work
Thank you! I’ve spent 40 years trying to describe living with nystagmus and sight loss. I identified exactly with what you said.
Hi Mark, my husband has nystagmus and sight loss too. All the best to you
Another fantastic video Emily. Very interesting as always, and I've submitted captions for it now. As a fellow nystagmus sufferer, I can certainly relate to problems like distance vision and recognising facial expressions. And technology is so helpful these days as well, I completely agree.
Thanks so much Glen :) I was actually thinking that I really needed to transcribe this one, so you've done me a real favour. Nystagmus can be so tricky because its changing and my eyes are always having to adjust to it. So I'm glad you could relate xx
Thank you for doing this video. My daughter has the exact same condition as you and she is really good at advocating for herself, but because shes only almost ten, you are much more articulate and this was really good to listen to. Thank you so much!
Thanks so much and I'm really glad your daughter can speak up for herself. Its something I learned through experience and many times of not having people listen to me. It comes with age I think :)
Hi Emily,
You are such an inspiration to many Blind people like myself. I am glad I found your Channel!
Thank you for sharing your experiences.
Keep smiling!
Thank you so much :) I'm glad my videos help x
Her videos really do help I also have optic nerve hypoplasia and I can’t see out of my right eye
I can’t believe I only just found this. I also have Septo Optic Dysplaysia. Though I’m a bit opposite. I can’t see anything out of my left eye, and have fairly usable vision in my right. My visual field is also constricted. My nystagmus is pretty noticeable as well
I must say, you are amazing and never stop being you!
Aww your so lovely! Thank you ❤️
My daughter has this from birth, also blind on right eye. She's 9 now. I was always curious how is her vision. I asked her of course, but your explanation put new light on it. Thank you and God Bless!
Mine too! I find the description words hard for my daughter as she doesnt understand herself.
Really enjoyed this video! The digital magnifiers are amazing arnt they! I was only told about th a year or so ago amd its made my life so much easier xx
Your description of nystagmus is pretty fantastic and I will kindly ask you to let me use it for future explanations! I have a bit more severe version of it than you, and my weird thing is that tilting my head doesn't help much, but my eyes, or more specifically my good eye, has actually found a position where the eye can be held steady... problem is, to sighties it looks ike I'm focusing to my right, when I'm in fact looking straight ahead!
you look so beautiful Em!!!!!! Also love the picture of you and Charlotte in the background.
You're an amazing young woman
Aww thanks so much honey :)
My eyesight seems to be similar to yours. I'm blind in my right eye too and also have Nystagmus. I do have peripheral vision though, but I do find that I bump into people on my right side when walking sometimes because I can't see them. I can't see very much at all without wearing a contact lens but the lens gives me enough vision to get around without a guide dog/cane. I'm still not able to drive and there's so many things I can't see but I get around alright.
It's nice to have found someone who has something similar and understands what it's like. Love your videos. 💕
Great video! I think you went into a lot more detail on this one compared to the previous "blindness" video. I am happy for you that you don't expect your sight to worsen. TFS! (Thx for including the funny moment w/your mom.)
Thank you :) and yeah I felt it was time that I did because in order to move forward in my channel I felt that I needed to be real and honest with my followers. So I'm glad its helped and hehe I love putting those moments in every so often.
I ❤️ you. Wish you weren't so darn far away LOL. We share a lot of commonalities with our blindness. My functional vision is highly environment and light dependent. I also have nystagmus, as well as astigmatism, and severe photophobia. Our attitudes are also very similar! Keep on keepin' on lady! ❤️❤️❤️
I have sight loss in one eye and would LOVE to see your winged liner trick!!
Maidens And Monsters 😀 I shall endeavour to make that happen
I used to do a similar thing but using my laptop, but without my glasses anything beyond about 10cm from my face is too blurry to see! I'll try with my phone though for some reason I hadn't though about using it
Really good explanation, as someone with sight loss in a parallel way, with my central vision being mainly affects (1/60, and 2/60 in each eye), and my peripheral vision somewhat peripheral .it is interesting to see how someone with different struggles goes about day-to-day.
Sight loss is so varied from person to person and even though two people might have the same eye condition they will see the world in very different ways. I'm so pleased that people like yourself are commenting with the way you see the world, because I made this video to prove a point that there are many grey areas to sight loss :)
Thank you for sharing this, I have the same condition and watch your videos so that I know I'm not alone:)
LOL! The horticulture intervention is hilarious...as is your telling of the fire engine story. You have such a warm, amusing sense of humour.
Thanks for sharing this....it was so interesting and it's appreciated.
Thank you my darling! xx
I just came from Charlotte Eades’s channel. In a video she talked about how you two are good friends, so I decided to check you out.
Olivia Petrowski thank you so much. Charlotte was a very dear friend to me x
LOL. Awesome analogies! Did you read the books to the series of misfortunate events?
my son has this condition. watching this video has really helped me a lot with him. He has is a strong kid but his SOD causes him to be delayed in a lot of areas like speech vision and many other things.
my right eye as well is out of commission. i have shocking depth perception and no peripheral vision. technology is great and i have si nany different magnifyers to use st work customers are always curious. i love your videos especially your make up for vision impaired people. keep up the great work!!! by the way im now on the waiting list for a guide dog here in Australia!!!
My eyesight is 6/60 in both eyes but I have peripheral vision and no central vision.. I I can relate to so much you say and then differ in other ways so it's cool to hear someone else's perspective... my eyes go haywire when I try to use my telescope and I can never focus on what I'm trying to look at.. so instead I just take a picture on my phone and zoom in... thank god for modern technology... another great video , I always look forward to these on my Friday night CZcams catch up..
Amen! Yes thank god for modern tech indeed! Thank you so much xx
I just share your videos, because I am exhausted having the same discussions for 50 years
Emily, you and I have similar vision. I think the only difference is that I have a little light perception in my right eye, but it's only enough to be annoying. Also, I think my nystagmus is worse. I had a little more sight as a kid, but it has decreased as a result of a car accident some years ago. I went from needing a cane only at night, to needing it almost all of the time. Now I'm working my 3rd guide dog (guide dog tag video coming soon).
I'm glad you understand how lucky you are that you had loads of technology at your fingertips during school. I was just completing University when the first iPhones came available. I didn't get my first computer until halfway through my degree. Now that we have this technology, I'm just beginning to learn the full extent of my capabilities.
Technology has made life so much easier for the disability community and I'm so glad thats its becoming more and more available and accessible. Oh my gosh, I take my hat off to you darling that must have been so difficult being at uni without all the technology we have now. I have the utmost respect for you xx
You are really strong person, I admire you sweetheart ❤❤❤
Aww thank you xx
You are the most beautiful and smart blind person I've seen ❤(heart)
if you still work for lush it would be interesting to do a video on how you work in retail as a visually impaired person.
I think our sight is similar, although I have sight in both eyes but i am partially sighted, I too have a Nystagmus but it's not very noticeable and I completely agree with your example with the camera out of focus. I can't see things to the side of me either, I don't have depth perception so going down public stair cases is harder and I too have 6/24 vision, I am also completely deaf in my right ear so that makes crossing the road that little bit harder too. I would really like to get a guide dog but I'm not sure if I would qualify or not. X
I know people who have hearing and visual impairments who get guide dogs, I'd say look into it if you feel that having a guide dog would help you x
hi Emily, that's a really good description of what you can see (and of everything else). do you have any facial recognition? like can you recognize people from the faces if they are close to you and you know them well, or do you go by voice or what thet do etc?
i try to be open too about what i donʻt see - and facial expressions are big on that list. i only realized how big after seeing some movies with audio description. imitation game was one of those - iʻd seen it before and loved it but didnʻt realize how much i had missed of the giant screen and on the small screen. i hate asking for help but itʻs quite a hassle trying to figure if iʻve found the correct product. i might find pancake mix that i thought was gluten free... guess the rest. so whip out a magnifying thing and/or ask for some help. in some stores it feels easier - cosmetic stores and running stores are good examples. i can ask for the exact product, describe the scents i like or tell what kind of running shoes feel good and that i need to be able to feel the ground so they canʻt be really thick and padded.
Thank you :) and with regards to your question I can't see facial expressions from a certain distance, I have to be very close to a person. But, I can recognise people if they are close to me and also by voice. Its funny because a friend of mine came to see me in lush and I didn't see her to start off with and then she came up to the counter and was like 'hey Emily!' So, I don't always recognise people and thats a big thing for me. Because I always worry that people who don't know me that well are going to think I'm ignoring them if I don't see the or recognise them from a distance. But I'm not rude I just can't see :)
Fashioneyesta I try sometimes telling new people that my facial memory isn't so good so if they see me somewhere, remind me again who they are - and where they know me from. Some of my neighbors I can vaguely recognize from their dogs, others.... no clue. Shrug...
Happy Friday sweetie wonderful vid to I'm pretty sure I knew most of it from others but it's always nice to hear watch your videos anyway
I do have one question very random I hope you don't mind have you ever considered wearing a wacky contact lenses in your right eye not to help with the sight or anything but just for fun or to mess with people there are some really cool ones out there
have a wonderful weekend beautiful xxx
Thanks Richard :)
Hehe, now Richard I am all up for expressing yourself in different ways. But, I don't think I'd personally go as far as to wear an experimental contact lens in my right eye. I don't think I could physically put one in my eye and they aren't all that safe for your eyes anyway :)
Hi I love what you do.
My 10 year old daughter has also onh and pendel nystagmus and blind on her right eye. She really wants to learn how to do makeup eyeliner and lipstick etc. Now I am trying tonhelping her do it but I could really use some tips or instruction video. 😅
So I can learn her to do it herself
I have a nystagmus too. I have been reading a book for about a year
I have that same diagnosis.
I too am vision impaired but I love to wear false lashes which do you think is better for a vision impaired lady to apply the Mink lashes or the magnetic lashes
My 4 year old has optic nerve hyperplasia in his left eye . He told me recently that his left eye is glitching 😢 so I clarified and ask if he can see me at all while I cover his good eye he said no .
Emily; David 32 from Brisbane Australia here i have been a fan for about 6 months; i have sever vision impairment (congenital catteracts; bilatteral aphakia and stable glaucoma just re watching this one again and i've got a doozey for u i was trying to catch a bus home the other night due to headlights i missed 2 buses within 45 sec. i didn't see them before they;had gone past the stop but afterwoods i managed to hail down a school bus- once again not much good to meLOL😂- don't feel too bad as i've trird to hail garbage trucks before been there know how silly it feels lol our local council lets VIP'S call in and have radio messages sent to the bus we need so they know we are waiting; i could use this service every trip but i find this helps a great deal at night for safety and my piece of mind. keep the video's comming! love the way you give an insight into our world, it makes me feel better knowing im not the only one having these issues!😊 DAVID BRISBANE AUSTRALIA.
I have biolateral optic nerve hypopleasia to
and I have a nystagmus, but it isn't that bad so most people can't notice it but when I'm tired my eyes move more
I see 6/24 vision too, but in both eyes instead of 1
Does your guide dog come with you to work? I work in a kitchen and legally that is the one place service dogs aren't allowed so I'm wondering if there are service dog users who only have their dog half of the time?
I have his as well
We have olmost the same vision in what we can see. I have ROP and astagmis. Sorry about spelling.
you are so pretty
Hi! I also have SOD ;)
Hiya!
When I read s book I read the same lines over and over because my eyes sort of flick back to the wrong place I guess
"this eye has left the building" made me lol! my right eye left the building too
Hehe :) maybe our right eyes are on a permanent holiday somewhere
Fashioneyesta they are probably on holiday at some tropical paradise but I hope the weather is horrid. Ew now I'm picturing eyeballs in chaise lounges.
Also can you do a tutorial of your eyeliner? It's such a pain to do winged eyeliner when you are partially sighted!
Fashioneyesta My real right eye left the building nearly 2 years ago. Hey I was completely blind in that right eye anyway so I don’t miss it. You don’t miss what you never had.
You should do a follow me around video
I may well do that :)
Snap my left eye goes walkies too. I can’t control it, I don’t have it in my right wye because that one is plastic. I have a contact lense for my left eye but that doesn’t really work because my left eye tends to wander off. With my lense in I know when it has moved because we check and my contact lense is in the right place meaning my eye has gone walkies. With the lense in when my eye is keeping still things are clear which without it in I never realised and when my eye goes walkies things go more blurry more blurry then my vision is without it in. Going for eye check ups very frustrating because I just can’t control the eye.
Eye.
I love the series of unfortunate events.
Me too! I hope they do a second series :)
It's been renewed for one!
Do let me know when you write that petition Emily. I will be sure to be your first signature. LOL
Hehe I will :)
I don't have no proof illusion myself I'm blind in my right eye and I also have nystagmus along with that a house I have glaucoma. does your local Cinema have descriptive video Services? If they do you should utilize it it would let you know what's going on as far as facial expressions or anything else that you can't see.
bluetech7753 it does actually but they're usually on quite late. But I have been to some as well as some audio described theatre trips too 😀
looks like my speech recognition on the phone it didn't get some comments right what I meant at the beginning of the comment was that I have no peripheral vision myself either
Thats ok, I kinda got the gist of what you meant :)
Hi, what is the app u us that is a voice over & it can read things for u? Thanks 😀 x
Voice over can be found under accessibility in general settings of your iPhone or other iOS devices. It may be different if you use a different make of phone. The apps that I use are ClaroRead, Prizmo and Seeing AI to read documents. Hope this helps x
Thank you Fashioneyesta x😀👍
So I have optic nerve damage from a brain tumour which has affected my field of vision similarly to your condition, but I'm also naturally short sighted so that's fun 😂
I'm glad I found this channel!
Like without my glasses anything beyond about 10cm from my face is too blurry to see
Emily I hope they make a second series 2. Maybe we can find a petition to sign or something. LOL
LOLS YES LETS! xx
There we go! Finally switched my commenting account over to my @craftyblindchick account. I'm Nicole Schultz-Kass in the previous comment. 😂
I am legally blind and I live like any normal person
Our busses up here are green, many a time I've put my hand out for a green truck (once it was the bin men and they tooted) cringe!!
I've only read Harry Potter now as an adult! Hated the fact I couldn't read it as a child! I didn't even know large print booked existed and I tried so many times to read the normal version but there was no hope haha I was shattered by the end of the first page!
I may also try your trick for eyeliner haha that's one thing I haven't conquered!
Great video Emily!! People often ask 'how do you do it?' And my reply is always 'I just do!' We make changes and adaptations because we have too! Why should we miss out on things that others experience! We just do things in our own way 😊 xx
OMG I can imagine x
Does your guide dog go to work with you?
Louise Rose with my previous job as a student ambassador she did. But at my job at lush I chose not to take her because the staff room is too small, hot and doesn't have proper ventilation. So it wouldn't be fair on her for the five hours I'm working. I was given the offer to have her minded by the centre staff during my shift. But I chose not to because I didn't want to leave her with people I didn't know. Plus my bus stop is literally across the road from my house so she wouldn't be getting a walk. On the two days I go to work I leave her at home and take her out for a walk somewhere when I get home :)
ah okay thank you very useful info. ive recently got a new job and not sure what I'm doing with my hearing dog yet hence why I was wondering what others do with there working dogs when they go to work x
Louise Rose I think it's worth chatting with your employers and seeing what facilities they have :)
I could not make good CZcams videos because I have such bad mustagmas
Harper Lee what sort of things do you think you would find difficult? Maybe I could help 🙂
Fashioneyesta I just have such a bad time with lights and there is not much that I can do
Lights can be a bit tricky, I have a ring light and it can sometimes aggravate my nystagmus. I find natural light can be a bit more kinder to my eyes, but I think it depends on everyones nystagmus. Also cameras can do a lot to increase the amount of light that your lease will get, so things like high aperture and exposure can really help if your eyes cannot tolerate a lot of light.
If you found reading so hard as a child, how come you never learned to read braille?
samsara I personally didn't learn it because I still had some useful sight left. I could read fine if I had my work enlarged or large print books.
U so cute
Aww thanks x