Nevermind. I paused the video to ask that question and as soon as I resumed play, you answered it for me XD thank you so much. You are very helpful and give me hope that one day we can have children together. That is what will make me the happiest.
Thank you so much for this video. My girlfriend of three years has the same condition as you and I am doing a bit of research on it. I am so proud of her in every way and I know she struggles with this, but she is strong and persistent. I believe (from my own research) that her type of ocular albinism isn't x-linked and that both her parents were carriers. I want kids badly when we grow up but she is hesitant. if i don't carry the same genetic trait, would our future children have this? Thankyou
I was born 3 months premature and had detaching underdeveloped retinas. I had to have cryogenic surgery as a newborn.
I have congenital nystsgmus.
Until my surgery to move my eyes, I use to have to hold my head up to see properly.
I'm having horizontal tenotomy next month which means they're going to cuts my horizontal muscles and sew them back in the same spot to slow down the shaking.
FYI: nystsgmus makes you sensitive to sunlight too due to t
Hey Casey, I have ocular albinism, I'm 18 and for years and years, I was told I wouldn't be able to drive, but my vision somehow actually improved over the years a bit, so i'm able to drive with restrictions, and I'm honestly just barely able to, like it's right around the cut-off for my state. So, I'm lucky in that aspect. I have nystagmus, strabismus, and photophobia. Your video made me feel way less alone about having it (never known others with it) so thank you very much :) Take care, Andrea
Haha Hey!! I love you. AND I was in choir all of high school - I love singing!! Also I'm pretty sure we're like the same age. OhmyGosh I can't even put into words how alike we are. Crazy stuff. I would love to get to know you:) - I mean that in the most non-creapiest way ever
KC, you seem like an amazing young woman! I love your sunny disposition :) When I have a daughter I pray that she is half as intelligent and funny as you are. Thanks for educating us about OA. Shine on smart girl!
You say that glasses won't help i have oa and glasses ddo help i mean they won't give you 20/20 but as for me glasses changed my visual acuity from20/600 to20/200 any little bit does help
I wasn't actually registered as blind when I was first born I was always just visually impaired. When I was 17 my sight got a lot worse now I'm legally blind. I get the glasses thing though my family were always like wear them and didn't believe me when I said they didn't work. I found it really difficult to come to terms with not bring able to drive because all my friends were learning. My parents didn't know anything about albinism when they had me as they themselves were only young so I've g
Casey, You might actually have a form OCA and not Ocular Albinism. It is very uncommon for a female to have OA since it's generally x-linked. It was only a few years ago that through doing research on my own that I found that I now believe that I have either OCA1B or OCA2. I was a lot you when I was a teenager By the way my name is Jessica
@jessandmarkgarrison Hi! Thanks for the comment. If you check out my newest video, you'll actually see that I has HPS type of albinism (hernansky pudlak syndrome) nice to meet you, Jessica!
Casey, You might actually have a form OCA and not Ocular Albinism. It is very uncommon for a female to have OA since it's generally x-linked. It was only a few years ago that through doing research on my own that I found that I now believe that I have either OCA1B or OCA2. I was a lot you when I was a teenager
your just like me i cant see the chalk bored either n they sit me n the front roll lol and i get the whole babyin you or not noticing you need something becuz im so independent i haate when ppl call my name n i dnt see them lol i hate that i look rude its ok it happens to me too n ppl thnk im rude cuz it too ima cheerleader but im afraid of balls too hee
ok i found this really wierd lol maybe its not but i also have ocular albanism and nystagmus i was born with is and i have blue eyes blond hair im really fare complected but i tought it was nice to see im not alone in this world with this condition i have a mild cause of nystagmus too but sometimes my eyes cross a lil n im due to have surgery im 16 n lived with it and live like any one else... question did they say u cud never drive?
ok i found this really wierd lol maybe its not but i also have ocular albanism and nystagmus i was born with is and i have blue eyes blond hair im really fare complected but i tought it was nice to see im not alone in this world with this condition i have a mild cause of nystagmus too but sometimes my eyes cross a lil n im due to have surgery im 16 n lived with it and live like any one else... question did they say u cud never drive?
find out what your true eye sight is and look up bioptics. My son uses them and this allows him to drive. Dr Henery Greene in Durham NC designs and sells them.
You thought you were just bored, but sweetheart, you just told MY life's story as a teen, and I was born in the '60's! I love how you express yourself too... You Really ROCK!!! Keep up the good work of being yourself, and loving it. Your Mom is a tremendous lady to allow you hold on to your spirit so well. Let me introduce myself..... I have this condition too..... and yet.......
Google Mem Nahadr
Thank you for your video...... have a WONDERFUL LIFE!!!!
thanks Casey, I just found out that I will be working with a young child with OA...(I am an OT in a school)...I feel relieved to know what it is and what OA isn't and that it will likely be a partnership with the student helping the teachers and staff to help him get what he needs.....thanks...
We had an appointment today with a team of Lila-Dawn's professional support team and they had a look at your videos. They thought that this was a WONDERFUL thing for you to do. They all said that they were going to go home after work today and watch your videos, and possibly pass them on to others.
They said your videos will be an inspiration to other parents, children, & family members when they watch your videos in the future.
hey all, im albino to e full extent, life will be hard, but you have to push through life however you can cuz there is no other option for us, be strong..........
Hello, my name is Nicole, I am 23 and I have a 2 1/2 year old son with nystagmus. I often wonder what life will be like for him when he gets older, so watching your video was amazing. Thank you. I also wanted to let you know that though your Ocular Albinism was passed by both parents it is the lesser common type. There is also what is called x link ocular albinism that is only passed from a mother(the carrier) to her son.
Your video was so encouraging to me! I just found out yesterday that my 3 month old son has OA and Nystagmus. I've thought a lot about what kind of kid/teen he will become. Your easy-going and confident personality brought a huge smile to my face and so much hope for my baby boy as he grows.
Plus, your information about the condition is so much easier to understand than reading articles on medical websites.
Thanks for your honesty! You don't know how much your video encouraged me!
It was a great idea. I am thinking in to do the same. Because is very important explain and divulge Ocular Albinism. to friends, future friends and people in general.
I'm from Brazil and I have albinism ocular too. I am in the last year of the college and it's been a big challengeI liked so much your video, congratulations!!!.
I have the same eye condition to and I am considerd legally blind and im light sensitive and photo phonic and I have nystagmas and ambliopia and 3 more conditions I cant spell them
i don't have the some eye condition as u but my vision is the same 20/400 and i understand completely when people treat u like a kid it kinda bugs me a times tooo
I've known I had OA my whole life and I knew some of the details of my condition but not everything and I was just trying to find out more and like I don't know ANYONE with the same condition as me and after seeing your video I feeel alot better about myself haha. I just turned 16 and like things are exactly the same for me. Thanks so much for posting this :)
Hi I really love this video. I am also legaly blind. I have been for past 4 years using the id cane but i only started to use mobile cane with ball tip. In the past 2 years.I love it better then the id cane. I am blind at 20/200. I have what is called astigmatisem. I also see shadows. I hated when the teacher also put me into the front of the class witch got me no where. I ended up copying my friends notes at the end. I also read braille. And large text at font size 18
Thanks so much for sharing this video. I was talking to a friend who has a 17 yr. old son with your condition. Our son, now 12, I think may have this too. He has visited so many doctors and there has never been anything conclusive. You have been such a huge help! Thanks for being so brave and transparent. You may just be a life saver for our son, Marcus! I will let you know in the future if indeed he does have it. God bless you!
Thanks so much for sharing this video. I was talking to a friend who has a 17 yr. old son with your condition. Our son, now 12, I think may have this too. He has visited so many doctors and there has never been anything conclusive. You have been such a huge help! Thanks for being so brave and transparent. You may just be a life saver for our son, Marcus! I will let you know in the future if indeed he does have it. God bless you! Marietta Egan
Hey, Thanks so much for sharing this video. I was talking to a friend who has a 17 yr. old son with your condition. Our son, now 12, I think may have this too. He has visited so many doctors and there has never been anything conclusive. You have been such a huge help! Thanks for being so brave and transparent. You may just be a life saver for our son, Marcus! I will let you know in the future if indeed he does have it. God bless you! Marietta Egan
Hey, Thanks so much for sharing this video. I was talking to a friend who has a 17 yr. old son with your condition. Our son, now 12, I think may have this too. He has visited so many doctors and there has never been anything conclusive. You have been such a huge help! Thanks for being so brave and transparent. You may just be a life saver for our son, Marcus! I will let you know in the future if indeed he does have it. God bless you! Marietta Egan
Hey, Thanks so much for sharing this video. I was talking to a friend who has a 17 yr. old son with your condition. Our son, now 12, I think may have this too. He has visited so many doctors and there has never been anything conclusive. You have been such a huge help! Thanks for being so brave and transparent. You may just be a life saver for our son, Marcus! I will let you know in the future if indeed he does have it. God bless you! Marietta Egan
I just saw this and we do a lot of the same things. I am legally blind and the same visual field. i hold my books about the same distance from my face as you do too. I think its great that you are such a positive person. People tell me i'm the same way. lol i can relate to the issue with people waving to you and you cant see them. I'll just be like hi how are you? and really have no clue who they are lol.
You are the first person with albinoism I can relate to. I can drive though. I have hair your color and stuff. I am really glad to see you make a video!
You say that you're in theater.. How do you do it with all the bright lights? My little brother has Ocular Albinism and my mom wanted to get him into theater. My brother can't do sports either. He just does Cross Country because that's the only sport he can do that doesn't involve a ball come at his face. Haha.
Casey, my son also has Ocular Albinism. He has dealt with all the struggles in life as you have. We did tell him at an early age that it was a definate probability that he'd never drive. He tells me he'll be fine, because he has friends that will drive him around. :) He has never mentioned that he couldn't see the board till tonight. I've always asked for him to be put in the front row. School has been a struggle because of the lack of understanding from teachers and staff.
Hey Casey, my son has Ocular Albinism too. He doesn't like to talk about it, I know that he deals with a lot and that it has been really hard to find a Doctor that even understands how to treat it. He does get to see a low vision teacher every week at school. I never knew till today that even though he does sit in the front seat he still can't see the board. We have had to fight the school just to get the teachers to do the little things that they do do. He has adapted well, as you have too
Hi Casey, I am 47 years old and just today found out that I have Ocular Albinism. I was told at a young age that i have RP...which is another story...I really liked your video, and so relate with everything you say....I actually have correctable vision to 20/50, so that makes me happy....God Bless you, keep making your videos...
Good explanation of our shared condition. I am nearly 40, never driven, and maintain full independence. (Thanks to my AMAZING wife.) Never give up the Great attitude.
oh and I also have pretty bad nystagmus, and my vision can only be corrected to 20 / 200. I have refused to wear glasses my whole life and have just adapted that way, the thing with my eyes though is it's not a problem with the eyes exactly it's my brain, my eyes themselves are fine, but i have a few problems with my brain that makes it that way.
Wow, this is really cool! I didn't know all of this! And i also have OA. It's cool to know that other people go through the same thing that i do! Thanks!
I have full blown albinism so I know what your going through!!! lol. I'm 26 and it's getting tougher to handle the bigger things that I need to get done. I'd love to talk with you or whoever else has this problem.. It's totally BA of you to put yourself out there with this video. I think about posting vid's to on this issue but since I'm pursing my music career I'm afraid it might take away from the talent part. I like you don't want pity either lol.
Casey, Just came across your video and believe it or not you're the first person I actually have seen with ocular albanism besides myself and I'm glad you handle it the way you do. Not a lot of people understand as you've obviously come across.. But I'm actually commenting to you bc I don't know if you've looked into the whole driving thing but you can actually get a license. Depends on the state you live in though. Email me if you want more info. defalex232323@yahoo.com. Cheers.
it would b amazing to talk to somebody who has the exact same thing and btw im sam like a guy hahahah :P............hit me up on email or something thanx
Hey my names sam im 14 (almost 15 in november) and i was born with exactly what you have. I have ocular albinism and a nystagmus .....i dont remember if i have astigmatism too or not. My mom checks the NOA website like once a week and she searches ocular albinism on googleoften and she saw this video and showed me today. I was surprised at how well you explained what i have tried so hard to explain to ppl imma post this on fb and use it to explain to ppl about it....hit me up sometime k?.
Hey Casey, I'm in your theater class. I never would have known! I noticed that you hold your books really close to your face and your nystagmus, but it doesn't affect your great personality. (btw, you sing really well.)
Just curious: have you been tested to see if you have OA or OCA? I ask because my son was diagnosed with OCA1b, a subtype of OCA that results in light colored hair (a lot like yours!) instead of dark brown like his brother, light skin that tans a little, brown moles. We saw he had problems with his vision when he was under 2, but it took until he was 7 to realize he actually has albinism.
Casey Believe it or not Your emotions and how your feeling can effect how bad the nystagmus is, I assume when your on stage singing your putting a lot of emotion and passion into your vocals that effects the eye movement, when your upset or angry that effects it and when your calm and relaxed the nystagmus is less noticeable. but your very lucky in this video i wouldnt of known you had nystagmus if you didnt say so like you said its very mild
@mainenwo You're completely right. I have some-what learned to control it, but it gets worse when I'm tired, mad, or nervous! Thank you for saying you didn't notice, it makes me feel better! :)
Most cases of ocular albinism are x-linked recessive, and therefore, more common in males (though you might have a less common variant). If XR, then you (KC) have a 50% chance of passing it on to your son if your partner does not have the gene. Albinism (not OA) is usually autosomal recessive and would occur equally in males and females. Just in case anyone was confused by the video...
Most cases of ocular albinism are x-linked recessive, and therefore, more common in males (though you might have a less common variant). If XR, then you (KC) have a 50% chance of passing it on to your son if your partner does not have the gene. Albinism (not OA) is usually autosomal recessive and would occur equally in males and females. Just in case anyone was confused by the video...
OMG! Intelligent and wise. So much wisdom at such a young age. "The world is not going to adjust to me so I have to adjust to the world". You are wise and mature well beyond your years. Keep it you and pass along some of that wisdom to others of your generation.
You rock. My 3.5 mos old son was just diagnosed. I shared your video with 2 people close to me that will be in his life for a long time. You have impressed us all. I look forward to your future posts and hope you don't think it too weird if we come to you for a question or two as I am committed to being a great mom like your mom is to you!
@shayelizabethkelly Dear Shay, Thank you ver much. That it so sweet and it means a lot to me. Weird? Not at all. I would be happy to answer any questions you have for me. Thanks again.
@woodarron Thanks you very much. That means a lot. As I have said to many other veiwers, I would be happy to answer any questions you may have, Thanks again for the comment!
i have the same condition as you and i would be horrified to make the video.. no offence......well i have it in my eyes skin and hair but i still have the same eye problem, but i hide it well haha!
I've just found out my 5 month old boy has ocular albinism with the nystagmus and your video has helped me understand and be prepared for what is in store for him. Thank you :)
X__X im legally blind and I'm guessing I cant drive either. Their like I need eye surgery! And that cant be corrected with surgeory. Which is what I HATE. Do you think I wanna be sitting at home cuz I cant drive? Like someone is gonna wanna drive me,
Thank you so much for your video. My 9-month old son was diagnosed with Nystagmus, mild, and they believe Ocular Albinism although genetic test to confirm is still a few months away. I love to see and hear how you are thriving. I hope my son is as positive and capable as you are. Thank you again.
i fet as if i was the one talking :) i completely relate to everything you said, if i strat writing i would probably not stop for 2 hours, so to make it short thank you soooo much for making this video, you rock!!! oh and btw you have an amazing voice =)
Like, it's a retinal-resolution problem rather than a refractive-anomaly problem. Thanks for giving folks a better understanding of the pigmentally challenged. You go, girl!
I have a condition caused by bilateral atrophy of the optic nerves lie you I can still see, I just function in a bubble, yeah I now the question why don't you wear glasses? I hate that question and I am 27 I have known about my vision since I was 7 the question will never go away but just have a sense of humor me I am one big waling blind joke and I know it
Hi Casey! I'm so glad I watched your video! I have OA too. And we have a lot in common, actually everything you said :p I'm 18 years old and I'm from Belgium. I could write a book but... for now I just wanted to react and I would like to get to know you better :) so if you have an emailadress or facebook account, please let me know. Thank you for posting this video, you explained it so well!
fuulAlbinism! im kayla 15 ill b 16 in july*i am independent so xtra stuff n skool to c i say NO I DNT NEED IT.lol sometime i do but ill b ok=)everyone loves me..i come off rude to but no biggie.driven ugh no.sports tryed it dnt work out .balls flying scary stuff! front row n skool yeah its just dumb lol the glasses ? is rele famus we both have the same responeshaha very pretty? yes i am..shaken eyes is mild..so write me back lol we cud so b friends-)
fuulAlbinism! im kayla 15 ill b 16 in july*i am independent so xtra stuff n skool to c i say NO I DNT NEED IT.lol sometime i do but ill b ok=)everyone loves me..i come off rude to but no biggie.driven ugh no.sports tryed it dnt work out .balls flying scary stuff! front row n skool yeah its just dumb lol the glasses ? is rele famus we both have the same responeshaha very pretty? yes i am..shaken eyes is mild..so write me back lol we cud so b friends-)
Casey, Ocular Albinism is X-linked which means your mom would be the one that would carry the gene. Which means it's on the sex chromsome. Also, generally they believe in a female has it that it's either OCA1B or OCA2. I'm also a female with what I believe is eihter OCA1B or OCA2. I was also diagnosed with Ocular Albinism when I was three or four years old. I only figured out through doing some research on my only either mid to late summer or early fall of last year or so ago.
I have a 5 year old grandson with OA. He lives with my husband and I. I am a nurse practitioner and was searching you tube for information on OA and came across your video. You did a great job about explaining how you see. I love the analogy about the film and the camera. You give great insight about how it is being a teen with OA. Thanks for all the information. Good Luck with your singing. Let's keep in touch.
Im an ER doctor and I saw my first case of OA on my shift last night ( an X-linked form, passed on from mom to both her sons). Wanted to learn more and your video was my first hit. This is an amazing explanation of not only the condition but how it affects your daily life. You are a super cool and very brave person. Keep educating people about this, you would an excellent teacher.
h there i just stumbled across your legally blind video! i dont have any pathological eye coditions other than being short sighted! i am a orthoptist and not so long ago i did diagnose a 3yr old chilf with a hybrid of ocular albinism! i am impressed with the knowledge and good choice of words used to explain to people on how it affects you! nicely done
I have a condition known as Optic nerve hypoplasia and it sort of sounds the same as what I do!! We have a lot in common! You are an inspiration! I love sing as well etc...
hi casey. i was in town today and i couldnt read the signs above the shops because i have poor vision lol. i went up to random people asking what they said lol. i looked so stupid
I went back to the area, realizing that everyone had gone into the nearby portable (I forget why - to talk about the next day or something). I got in, realized that I didn't have my glasses, and said, "Oh! I have to get my glasses! I'll be right back!" lol.
Umm...no. My teacher eventually sent someone out to help me (realizing that I couldn't see), and the girl found them right away. How frustrating. Heh.
Anyway! That's enough out of me! (YAY! FINALLY! lol.)
One more comment on this one that i forgot to mention: I'm bad at sports, but that's probably just 'cause I'm the intellectual type.
One time, in HS P.E., we were doing passing exercises with softball. I didn't bring my mitt high enough, and it hit me in the nose. Thankfully, it didn't break it, but it did knock off my glasses, and it did make my nose go kinda numb for a bit.
Sorry for all the comments cluttering up your page! I just related a lot to what you said! : )
Now I'm off to listen to you sing!
Don't bother looking for any videos by me. I'm too shy to post any of my recordings of my singing, though I'm not too shy to sing along to my iPod as I walk down the street...? lol. Crazy person!
For school, I always sit up front. For me, this makes a HUGE difference (since I have some usable sight in my right eye). I hated in high school when teachers had seating charts, and I'd have to go up to them and say, "I have to sit up front; I can't see unless I'm right up front."
I HATE having to ask people what something says; they always seem really irritable even when I mention that I can't really see. Aside from contacts/ glasses, I have no visual aids to help me.
I'll never drive - partially because I have very little peripheral vision (thanks to the way my retinas are) but mainly because of my poor vision. I might meet the requirements to get a license, but I don't trust myself to be on the road, so I walk and take buses. I rely a lot on landmarks and hearing the automated voice say what street we've approached.
I go into a fast-food restaurant, and I can't read the menu board behind the people at the register. I feel like my family members or friends get irritable or think I'm dumb for asking what they serve (if I've never been to the place or haven't been there for a while). If I'm by myself, I ask the person at the register or strain my eyes. lol.
As previously stated, I'm unobservant even with the aid of my right eye. I'll have trouble recognizing people. People will be confounded that I don't notice them when they're standing a few feet away. "Didn't you see me waving?" Nope! I didn't know that was you! : P
Sometimes, (I don't know if this is cognitive or part of my visual problems) I don't remember where we're sitting at a restaurant or a movie theater. I have trouble going down stairs.
I sit pretty much right in front of the TV, and my family members get bewildered and maybe even irritated at this. At least, they used to; now they're used to it. Sometimes, they'll ask me to move off to the side or sit back. Again, my mom's like, "You really can't see it that well from the couch?" No! I can't! : (
Irony: I'm a visual learner. Haha. No joke. I remember things better if I can associate a picture or something with it.
I have pretty good hearing, and I love music. I love to sing, and I play piano. My sight-reading is horrible, and I stupidly just realized right now WHY. *Because my vision sucks, and I can't expect myself to group all those notes like one needs to sight-read...unless I lean in really close to the page, lol*
I'm unobservant, and my family doesn't really get that it's because of my eyesight. My mom's been the one to ask, "You need it that close?" when she sees me holding up a book to my face.
Ugh. I just got that thing that asks you to type in the image (the code word) that you see so that you can keep commenting. I can never see those very clearly. Bleh. (Right eye to the rescue again!)
Along with being legally blind, my left eye is lazy. Most people don't notice it until I tell them about it, and then they're like, 'Oh, yeah! It kinda is!' I notice it in all my pictures. -.-
My eyes always look glazed in pics because I guess I have trouble focusing them. lol.
I rely on my right eye to see for me. I've had people wonder (when I tell them about my left eye), "You're blind in one eye?" No, I just can't read out of it - and, if I cover up my right eye, I realize how little I see out of it. lol.
Apparently, premature babies are at risk for a lot more things than what I got. I ended up being an honors student instead of having brain damage; I avoided getting any debilitating things like Cerebral Palsy. I got off really lightly, so I'm glad for that.
My cryosurgery saved my eyesight to an extent: I'm legally blind in my left eye and nearsighted in my right. I've worn glasses all my life; I even have baby pics with them. I've worn contacts since I was fifteen or sixteen, which I prefer to glasses, but it also means that people don't know that I have trouble seeing.
I was born in 1988. In fact, my 21st birthday is coming up on the 28th of this month! Woot! Ahem! Moving along!
Retinopathy of Prematurity could have stolen my eyesight. What saved it was cryosurgery. Recently, I spoke with my dad, and he mentioned that that was what made him feel saddest for me when I was a baby in the NICU - seeing my eyes swollen to the size of golf balls. Meanwhile, the rest of me is this tiny thing. Eesh.
I was born FOUR months premature. I weighed in at one pound, six ounces. (lol. I just typed "sex" instead of "six". Gotta love typos!)
I had open heart surgery a couple of days after I was born. I was also on a respirator, which almost shredded my lungs (which had Strep B or something in them, so they're a bit scarred, I think?) and possibly damaged my retinas - in addition to ROP.
Rather than send you a message, I'm going to comment so that more people can read it. I have a lot to say, though, so I'm probably going to have to split it up into multiple comments! Be forewarned!
First of all, I love you. lol. Paramore in the background? Hell yeah! LOVE Paramore; they're one of my favorite bands.
Everything you said was so, "Yep! Been there!" for me. I'll start a new comment to explain my vision problems.
my dad is legally blind and color blind and his vision is really bad. he can play sports though. he is a beast at basketball and can run for long distances so no it isnt that your legally blind its just that you arent any good lol
Thank you for your insight, from your prospective on OA, My 5year old grandson Jacob has this and has, from what we understand around 20/200 vision. He is in regular school and has already experienced some harassment as well as some help from classmates.
Hi! I liked your video and thanks for uploading it! I do know what be 'legally blind' means. I' m visually impaired. I had a condition called Behcet disease which includes eye problems due to recurrent uveitis. So, the problem is exactly in my retina, in the central portion of it (mainly) and also in the peripheral part. That means that I share many of you difficulties. I don' t like 'incoming'balls' either. Have you ever considered swimming as an alternative? I assure you, it is great fun!.
damn it i just lost everything i typed about my brother having regular albinism and how i know he has the same problem with people thinking he's rude cause he cant recognize them from far away. well nvm it looks like i just typed it all again. oh. i know people think this about his nystagmus and im wondering if anyone's ever asked it about you. people always ask if his vision moves back and forth cause his eyes do. its a legit question i guess but obviously no, he just has blurry steady vision
hey, I have the full albinism, the hair eyes and skin, my eyes are blue and I dont normally wear glasses so people just think I dye my hair white :P but my vision is 6/60 so its a bit better than yours but as you say doesnt make much of a difference. Im a boy and am 16 also but I live in Scotland.
You are so freaking cute, & I can completely relate.
The other day I was talking to these people like, "Yo, I'm legally blind" & they were just trippin & going, "Dude, no way. How is that possible? You're not wearing glasses!" etc. & I pretty much had to explain everything that you said in your video.
This is going to be a biiig help for the people who just don't get it.
If you ever want to chat, I'd be happy to.
It's good meeting people who are in the same boat.
I would like to thank you for this video. My baby girl was just diagnosed with OA, and it is hard to try to explain to people what sorts of things she can and can not see. Now I can give them some explanation from referring them to your video. It is hard to find many first hand info from others diagnosed with OA, so I was very happy to find this. Thank you for taking the time to create this video.
Hi, OC runs in my family also. I'm a carrier & my hubby is not. My son's have a 50/50 chance of getting it. My son who is 5 does have it. We are waiting to see if my daughter who is 1 is a carrier. They see a ped opthamologist annualy. Not quite sure what my son see's. My dad is legally blind & was able to take courses & wear special binocular glasses to drive in his small town. Every case is different, but it was good hearing your story. My son is just old enough to explain his.
I have myopic macula degeneration, and am legally blind. I do wear corrective lenses, without them all I would be able to see is colors. I have lost my central vision in my right eye, and though I have central vision in my left eye, the vision I do have is quite poor. I don't drive, and like you, I love to read. I have to use a magnifying glass or read extra large print, with bright light to see. I have a question....Do your eyes get red, sore and swollen from eye strain?
I too have OA & nystagmus. 20/200 vision without corrective lenses, and about 20/60 with. I wear RGP contacts or glasses. I too was always told that I'd never drive, wouldn't be able to do or see anything, but I refused to believe that. There's so much they can do now, I just kept on searching until I found the right doctors. They can't treat the retina problems, but they can treat the nystagmus, which can improve the vision some. I'm living proof of that. Thanks for the video my fellow albino!
If glasses didn't work for me I know I'd be legally bilnd. My eyesight is terrible so terrible infact that my eyesight can't be perfect even with glasses, but it's much better than seing everything in a color-mush-fuzz. I can relate to you (Especially when I loose my glasses) And I wouldn't wish bad eyesight on anyone... it's so annoying.
Casey, great video! I'm 54 with OA and can relate to almost everything in your clip as well as the posted comments. Not driving IS a big thing in many places, but consider living somewhere with a good mass-transit system. (I wish I did.) I can't wait for the price of e-book readers to come down. (Make any book large-print, yeah!.) Binoculars at sporting events, yes, they get heavy after awhile. I'm guessing your eyes look so dark on video due to the lack of pigment in the iris.
Girl You are AWESOME!. I also have OC and am 45, yes old enough to be your mom... but we have a connection that not many people understand. Thanks for sharing.
Hi Casey, love your video and think you are quite funny. I am 27 and I am legally blind also. I get annoyed with the glasses and contacts question too. Oh yeah and I get annoyed when people say hi and you don't know who they are LOL.
Hey I am also Legally blind. I have 20/400 in my right eye and 20/2000 in my left. I also have nstagnis (SP?) (really not sure how to spell it). But I have Toxoplasmosis.
I can relate to everything in your video! If you want send me a message sometime on AIM: Starphoenix87 !!! Looking forward to talking with you! Oh and about the nstagnis (SP?) sorry cant spell lol. I notice it a lot when I am nervous or upset messes up my vision more too.. Dunno why just happens.....
Your comparison to the camera lens and film is pretty good, but in this day and age I compare everyone to having these new HD 1080p flat screen tv's as eyes whereas we have eyes of a tv in the late 80's early 90's...
We get the picture, but its just not as great as everyone elses ya know...
The best way to inform people I beleive is letting them know what u can and can't do...
---Not noticing someones scars or wrinkles immediately...
---Being labeled "rude" for not waving or noticing someone as you noted, due to the fact we just plain didn't see it lol...
---My biggest problem, not being able to drive, it affects your life in so many ways, from work, school, relationships, and so on... Not to mention a love for cars, n' not being able to drive them...
---Miss the obvious sometimes, "if it were a snake it woulda bit you" type deal... hopefully it never is a real snake lol...
---Menus at fast food places like Mc Ds or Taco Bell, thank goodness for pictures, cuz if you dont know the menu, you may be stuck sometimes getting the wrong thing or paying more than you wanted too
For ppl with OA, its a must to keep a positive attitude, because in this day and age we are a step behind, but there are so many things we can do... You learn to adapt, and you make dew There is no need to put up fingers and ask how many are up, I always return the middle one up and ask how many Im holding up
I feel like my OA isn't as sever as yours (Caseys), I hated the overhead in school but made dew with normal test and could read most of the stuff on the board, however I'm illiterate when it comes to reading cursive handwriting, and I did miss a few notes through the years in school
Yes, cursive writing is so difficult becuase everyone makes their letters differently. I just tell people to print if they want to write soemthing down for me.
I made it though, I am a college graduate Im able do yard work, can actually play pool fairly decent, cook, clean (may miss a spot), use a computer, and play video games... I was the 2009 Gillette world champ in Nascar 09, and it took a great deal of concentration and skill, along with a big TV lol... Though I made that incredible feat, sometimes tasks that involve a lot of eye hand coordination can be quite difficult
I hope this post helps, and if it doesn't well refer back to the vid, because its pretty good...
ALSO, genetic engineering could be our key to full vision, I've read of a study on lab rats that were able to grow pigment in their retinas, so now that Obama and the fed. gov. have lifted the stem cell ban, our dreams may come true...
Nevermind. I paused the video to ask that question and as soon as I resumed play, you answered it for me XD thank you so much. You are very helpful and give me hope that one day we can have children together. That is what will make me the happiest.
oneviolinist 1 week ago
Thank you so much for this video. My girlfriend of three years has the same condition as you and I am doing a bit of research on it. I am so proud of her in every way and I know she struggles with this, but she is strong and persistent. I believe (from my own research) that her type of ocular albinism isn't x-linked and that both her parents were carriers. I want kids badly when we grow up but she is hesitant. if i don't carry the same genetic trait, would our future children have this? Thankyou
oneviolinist 1 week ago
Don't feed the trolls like Dabeshu. Good video.
likeslunch 1 week ago
The light now being able to stabilize on the fovea.
poshyKeen123 1 month ago
I'm legally blind too.
I'm 23 and can't drive.
I was born 3 months premature and had detaching underdeveloped retinas. I had to have cryogenic surgery as a newborn.
I have congenital nystsgmus.
Until my surgery to move my eyes, I use to have to hold my head up to see properly.
I'm having horizontal tenotomy next month which means they're going to cuts my horizontal muscles and sew them back in the same spot to slow down the shaking.
FYI: nystsgmus makes you sensitive to sunlight too due to t
poshyKeen123 1 month ago
Hey I don't have it but I hang with. Three people who do. Im happy that u post this video cause I no a little more of what not to do.
tasha32231803 2 months ago
@KCfan7989 Sorry
dabeshu 2 months ago
Wow, resembles my symptoms greatly! It's always good to know I'm not the only one out there!
jakeblunsford 4 months ago
Hey Casey, I have ocular albinism, I'm 18 and for years and years, I was told I wouldn't be able to drive, but my vision somehow actually improved over the years a bit, so i'm able to drive with restrictions, and I'm honestly just barely able to, like it's right around the cut-off for my state. So, I'm lucky in that aspect. I have nystagmus, strabismus, and photophobia. Your video made me feel way less alone about having it (never known others with it) so thank you very much :) Take care, Andrea
andreaxx6 4 months ago
You have a great atitude. Keep it up. As someone with OA and have done well with life (my opinion). Don't ever change.
rboesen1970 4 months ago
Haha Hey!! I love you. AND I was in choir all of high school - I love singing!! Also I'm pretty sure we're like the same age. OhmyGosh I can't even put into words how alike we are. Crazy stuff. I would love to get to know you:) - I mean that in the most non-creapiest way ever
mashallxoxo 5 months ago
You are fabulous! Thank you for this vid (((HUG)))
LettyCVM 5 months ago
I have albinism too. I can totally relate to this video. It's nice to hear your story. I'm glad you shared this.
-Lauren
LAshlieH 5 months ago
KC, you seem like an amazing young woman! I love your sunny disposition :) When I have a daughter I pray that she is half as intelligent and funny as you are. Thanks for educating us about OA. Shine on smart girl!
brokensmilee07 5 months ago
I have nystagmus too
3043poppop 6 months ago
I have albinism (regular albinism) but I'm not legally blind I just have low vision
3043poppop 6 months ago
You say that glasses won't help i have oa and glasses ddo help i mean they won't give you 20/20 but as for me glasses changed my visual acuity from20/600 to20/200 any little bit does help
spindowny30 7 months ago
I wasn't actually registered as blind when I was first born I was always just visually impaired. When I was 17 my sight got a lot worse now I'm legally blind. I get the glasses thing though my family were always like wear them and didn't believe me when I said they didn't work. I found it really difficult to come to terms with not bring able to drive because all my friends were learning. My parents didn't know anything about albinism when they had me as they themselves were only young so I've g
LiverBird1803 7 months ago
Casey, You might actually have a form OCA and not Ocular Albinism. It is very uncommon for a female to have OA since it's generally x-linked. It was only a few years ago that through doing research on my own that I found that I now believe that I have either OCA1B or OCA2. I was a lot you when I was a teenager By the way my name is Jessica
jessandmarkgarrison 7 months ago
@jessandmarkgarrison Hi! Thanks for the comment. If you check out my newest video, you'll actually see that I has HPS type of albinism (hernansky pudlak syndrome) nice to meet you, Jessica!
KCfan7989 7 months ago
Casey, You might actually have a form OCA and not Ocular Albinism. It is very uncommon for a female to have OA since it's generally x-linked. It was only a few years ago that through doing research on my own that I found that I now believe that I have either OCA1B or OCA2. I was a lot you when I was a teenager
jessandmarkgarrison 7 months ago
Great video :) You have a wonderful personality. I'm in college right now and have it. Keep the faith. Jesus, people, love :)
sephyslayer117 7 months ago
Awesome music! I love paramore ^_^ Brighter's my favorite song. This video is pretty educational too.
MyraMags 8 months ago
your just like me i cant see the chalk bored either n they sit me n the front roll lol and i get the whole babyin you or not noticing you need something becuz im so independent i haate when ppl call my name n i dnt see them lol i hate that i look rude its ok it happens to me too n ppl thnk im rude cuz it too ima cheerleader but im afraid of balls too hee
SammieBlake123 8 months ago
ok i found this really wierd lol maybe its not but i also have ocular albanism and nystagmus i was born with is and i have blue eyes blond hair im really fare complected but i tought it was nice to see im not alone in this world with this condition i have a mild cause of nystagmus too but sometimes my eyes cross a lil n im due to have surgery im 16 n lived with it and live like any one else... question did they say u cud never drive?
oh my visions 2400 too ahaha
SammieBlake123 8 months ago
ok i found this really wierd lol maybe its not but i also have ocular albanism and nystagmus i was born with is and i have blue eyes blond hair im really fare complected but i tought it was nice to see im not alone in this world with this condition i have a mild cause of nystagmus too but sometimes my eyes cross a lil n im due to have surgery im 16 n lived with it and live like any one else... question did they say u cud never drive?
SammieBlake123 8 months ago
find out what your true eye sight is and look up bioptics. My son uses them and this allows him to drive. Dr Henery Greene in Durham NC designs and sells them.
Jordan12291993 8 months ago
You thought you were just bored, but sweetheart, you just told MY life's story as a teen, and I was born in the '60's! I love how you express yourself too... You Really ROCK!!! Keep up the good work of being yourself, and loving it. Your Mom is a tremendous lady to allow you hold on to your spirit so well. Let me introduce myself..... I have this condition too..... and yet.......
Google Mem Nahadr
Thank you for your video...... have a WONDERFUL LIFE!!!!
madwoman3 8 months ago
hey what about like a retina transplants is that a real surgury or did i just see tht in the movie "THE EYE"
jayzg60 8 months ago
@jayzg60 I think it can be done, but the risk of going totally blind is much too great, and i would never want to lose the vision i already have.
KCfan7989 8 months ago
thanks Casey, I just found out that I will be working with a young child with OA...(I am an OT in a school)...I feel relieved to know what it is and what OA isn't and that it will likely be a partnership with the student helping the teachers and staff to help him get what he needs.....thanks...
marticapuco 9 months ago
We had an appointment today with a team of Lila-Dawn's professional support team and they had a look at your videos. They thought that this was a WONDERFUL thing for you to do. They all said that they were going to go home after work today and watch your videos, and possibly pass them on to others.
They said your videos will be an inspiration to other parents, children, & family members when they watch your videos in the future.
Thank you again Casey
You are wonderful
Travis (from Facebook)
ravenflight20000 9 months ago
hey all, im albino to e full extent, life will be hard, but you have to push through life however you can cuz there is no other option for us, be strong..........
aaanglfromhvn 10 months ago
Hello, my name is Nicole, I am 23 and I have a 2 1/2 year old son with nystagmus. I often wonder what life will be like for him when he gets older, so watching your video was amazing. Thank you. I also wanted to let you know that though your Ocular Albinism was passed by both parents it is the lesser common type. There is also what is called x link ocular albinism that is only passed from a mother(the carrier) to her son.
dallan813 10 months ago
Your video was so encouraging to me! I just found out yesterday that my 3 month old son has OA and Nystagmus. I've thought a lot about what kind of kid/teen he will become. Your easy-going and confident personality brought a huge smile to my face and so much hope for my baby boy as he grows.
Plus, your information about the condition is so much easier to understand than reading articles on medical websites.
Thanks for your honesty! You don't know how much your video encouraged me!
fourchicksandadaddy 10 months ago
Thank you so much for sharing your video! Tt was so good watch this video, by the way, I cried, in some moments, when I watched...
I want meet more people with OA,:because it is so good listen other experience and talk to someone that understand very wel about this vision problem.
Best regards!
Ariane.
Ps.: Sorry for my English, I'm still learning... :)
Ariane3729 10 months ago
It was a great idea. I am thinking in to do the same. Because is very important explain and divulge Ocular Albinism. to friends, future friends and people in general.
Ariane3729 10 months ago
Hi!
I'm from Brazil and I have albinism ocular too. I am in the last year of the college and it's been a big challengeI liked so much your video, congratulations!!!.
Ariane
Ariane3729 10 months ago
I have the same eye condition to and I am considerd legally blind and im light sensitive and photo phonic and I have nystagmas and ambliopia and 3 more conditions I cant spell them
skaterchic1243 11 months ago
i don't have the some eye condition as u but my vision is the same 20/400 and i understand completely when people treat u like a kid it kinda bugs me a times tooo
Elvisfan81 11 months ago
like wow, just wow(x
I've known I had OA my whole life and I knew some of the details of my condition but not everything and I was just trying to find out more and like I don't know ANYONE with the same condition as me and after seeing your video I feeel alot better about myself haha. I just turned 16 and like things are exactly the same for me. Thanks so much for posting this :)
4Haushinka 11 months ago
Hi I really love this video. I am also legaly blind. I have been for past 4 years using the id cane but i only started to use mobile cane with ball tip. In the past 2 years.I love it better then the id cane. I am blind at 20/200. I have what is called astigmatisem. I also see shadows. I hated when the teacher also put me into the front of the class witch got me no where. I ended up copying my friends notes at the end. I also read braille. And large text at font size 18
Munro27v 1 year ago
Thanks so much for sharing this video. I was talking to a friend who has a 17 yr. old son with your condition. Our son, now 12, I think may have this too. He has visited so many doctors and there has never been anything conclusive. You have been such a huge help! Thanks for being so brave and transparent. You may just be a life saver for our son, Marcus! I will let you know in the future if indeed he does have it. God bless you!
khunterjumpergurl 1 year ago
Thanks so much for sharing this video. I was talking to a friend who has a 17 yr. old son with your condition. Our son, now 12, I think may have this too. He has visited so many doctors and there has never been anything conclusive. You have been such a huge help! Thanks for being so brave and transparent. You may just be a life saver for our son, Marcus! I will let you know in the future if indeed he does have it. God bless you! Marietta Egan
khunterjumpergurl 1 year ago
This has been flagged as spam show
Hey, Thanks so much for sharing this video. I was talking to a friend who has a 17 yr. old son with your condition. Our son, now 12, I think may have this too. He has visited so many doctors and there has never been anything conclusive. You have been such a huge help! Thanks for being so brave and transparent. You may just be a life saver for our son, Marcus! I will let you know in the future if indeed he does have it. God bless you! Marietta Egan
khunterjumpergurl 1 year ago
This has been flagged as spam show
Hey, Thanks so much for sharing this video. I was talking to a friend who has a 17 yr. old son with your condition. Our son, now 12, I think may have this too. He has visited so many doctors and there has never been anything conclusive. You have been such a huge help! Thanks for being so brave and transparent. You may just be a life saver for our son, Marcus! I will let you know in the future if indeed he does have it. God bless you! Marietta Egan
khunterjumpergurl 1 year ago
Hey, Thanks so much for sharing this video. I was talking to a friend who has a 17 yr. old son with your condition. Our son, now 12, I think may have this too. He has visited so many doctors and there has never been anything conclusive. You have been such a huge help! Thanks for being so brave and transparent. You may just be a life saver for our son, Marcus! I will let you know in the future if indeed he does have it. God bless you! Marietta Egan
khunterjumpergurl 1 year ago
I just saw this and we do a lot of the same things. I am legally blind and the same visual field. i hold my books about the same distance from my face as you do too. I think its great that you are such a positive person. People tell me i'm the same way. lol i can relate to the issue with people waving to you and you cant see them. I'll just be like hi how are you? and really have no clue who they are lol.
Cuppycake1032 1 year ago
You are the first person with albinoism I can relate to. I can drive though. I have hair your color and stuff. I am really glad to see you make a video!
smileylittleblonde 1 year ago
btw clikclakrandomcrap is me.. I deleted that channel and made this one now
FamilyAndLife 1 year ago
You say that you're in theater.. How do you do it with all the bright lights? My little brother has Ocular Albinism and my mom wanted to get him into theater. My brother can't do sports either. He just does Cross Country because that's the only sport he can do that doesn't involve a ball come at his face. Haha.
jessigirlie4 1 year ago
Hi! I have albinism too though I'm not sure which type. Anyway thanks for posting this.
Oh and I like how you explained your vision. I'm 21 and have never heard it explained like that :)
M3iit 1 year ago
Casey, my son also has Ocular Albinism. He has dealt with all the struggles in life as you have. We did tell him at an early age that it was a definate probability that he'd never drive. He tells me he'll be fine, because he has friends that will drive him around. :) He has never mentioned that he couldn't see the board till tonight. I've always asked for him to be put in the front row. School has been a struggle because of the lack of understanding from teachers and staff.
bushfaminwa 1 year ago
Hey Casey, my son has Ocular Albinism too. He doesn't like to talk about it, I know that he deals with a lot and that it has been really hard to find a Doctor that even understands how to treat it. He does get to see a low vision teacher every week at school. I never knew till today that even though he does sit in the front seat he still can't see the board. We have had to fight the school just to get the teachers to do the little things that they do do. He has adapted well, as you have too
bushfaminwa 1 year ago
Hi Casey, I am 47 years old and just today found out that I have Ocular Albinism. I was told at a young age that i have RP...which is another story...I really liked your video, and so relate with everything you say....I actually have correctable vision to 20/50, so that makes me happy....God Bless you, keep making your videos...
vevaroth 1 year ago
Good explanation of our shared condition. I am nearly 40, never driven, and maintain full independence. (Thanks to my AMAZING wife.) Never give up the Great attitude.
MrDavidlfields 1 year ago
Hi I am a person that has albinism too but I have it fully but anyway itotaly can relate to everything u just said so thanks for making this video :)
myfabworld247 1 year ago
oh and I also have pretty bad nystagmus, and my vision can only be corrected to 20 / 200. I have refused to wear glasses my whole life and have just adapted that way, the thing with my eyes though is it's not a problem with the eyes exactly it's my brain, my eyes themselves are fine, but i have a few problems with my brain that makes it that way.
Starryillusion 1 year ago
I have no eye color due to a genetic malfunction, it's a little bit different than this but the result is the same :)
Starryillusion 1 year ago
Wow, this is really cool! I didn't know all of this! And i also have OA. It's cool to know that other people go through the same thing that i do! Thanks!
ItsKensy 1 year ago
I have full blown albinism so I know what your going through!!! lol. I'm 26 and it's getting tougher to handle the bigger things that I need to get done. I'd love to talk with you or whoever else has this problem.. It's totally BA of you to put yourself out there with this video. I think about posting vid's to on this issue but since I'm pursing my music career I'm afraid it might take away from the talent part. I like you don't want pity either lol.
Smity1859 1 year ago
Casey, Just came across your video and believe it or not you're the first person I actually have seen with ocular albanism besides myself and I'm glad you handle it the way you do. Not a lot of people understand as you've obviously come across.. But I'm actually commenting to you bc I don't know if you've looked into the whole driving thing but you can actually get a license. Depends on the state you live in though. Email me if you want more info. defalex232323@yahoo.com. Cheers.
theflightstation 1 year ago
it would b amazing to talk to somebody who has the exact same thing and btw im sam like a guy hahahah :P............hit me up on email or something thanx
Blackplague100 1 year ago
Hey my names sam im 14 (almost 15 in november) and i was born with exactly what you have. I have ocular albinism and a nystagmus .....i dont remember if i have astigmatism too or not. My mom checks the NOA website like once a week and she searches ocular albinism on googleoften and she saw this video and showed me today. I was surprised at how well you explained what i have tried so hard to explain to ppl imma post this on fb and use it to explain to ppl about it....hit me up sometime k?.
Blackplague100 1 year ago
I had no pigment in my eyes but no longer sensitive to light.
I had surgery to block the rays and lights. Very Happy :)
the site is website is brightocular
XAlbino1 1 year ago
Hey Casey, I'm in your theater class. I never would have known! I noticed that you hold your books really close to your face and your nystagmus, but it doesn't affect your great personality. (btw, you sing really well.)
TheDarkAngelGothGirl 1 year ago 6
@TheDarkAngelGothGirl AW! Thank you so much! mYou're awesome!
KCfan7989 1 year ago
Just curious: have you been tested to see if you have OA or OCA? I ask because my son was diagnosed with OCA1b, a subtype of OCA that results in light colored hair (a lot like yours!) instead of dark brown like his brother, light skin that tans a little, brown moles. We saw he had problems with his vision when he was under 2, but it took until he was 7 to realize he actually has albinism.
IftheShewfits 1 year ago
Casey Believe it or not Your emotions and how your feeling can effect how bad the nystagmus is, I assume when your on stage singing your putting a lot of emotion and passion into your vocals that effects the eye movement, when your upset or angry that effects it and when your calm and relaxed the nystagmus is less noticeable. but your very lucky in this video i wouldnt of known you had nystagmus if you didnt say so like you said its very mild
mainenwo 1 year ago
@mainenwo You're completely right. I have some-what learned to control it, but it gets worse when I'm tired, mad, or nervous! Thank you for saying you didn't notice, it makes me feel better! :)
KCfan7989 1 year ago
This has been flagged as spam show
Most cases of ocular albinism are x-linked recessive, and therefore, more common in males (though you might have a less common variant). If XR, then you (KC) have a 50% chance of passing it on to your son if your partner does not have the gene. Albinism (not OA) is usually autosomal recessive and would occur equally in males and females. Just in case anyone was confused by the video...
cnk537 1 year ago
Most cases of ocular albinism are x-linked recessive, and therefore, more common in males (though you might have a less common variant). If XR, then you (KC) have a 50% chance of passing it on to your son if your partner does not have the gene. Albinism (not OA) is usually autosomal recessive and would occur equally in males and females. Just in case anyone was confused by the video...
cnk537 1 year ago
OMG! Intelligent and wise. So much wisdom at such a young age. "The world is not going to adjust to me so I have to adjust to the world". You are wise and mature well beyond your years. Keep it you and pass along some of that wisdom to others of your generation.
ReadNewsGroup 1 year ago
Dear Casey,
You rock. My 3.5 mos old son was just diagnosed. I shared your video with 2 people close to me that will be in his life for a long time. You have impressed us all. I look forward to your future posts and hope you don't think it too weird if we come to you for a question or two as I am committed to being a great mom like your mom is to you!
Best regards,
Shay
shayelizabethkelly 1 year ago
@shayelizabethkelly Dear Shay, Thank you ver much. That it so sweet and it means a lot to me. Weird? Not at all. I would be happy to answer any questions you have for me. Thanks again.
Casey
KCfan7989 1 year ago
KC my 1 year old son has OA - thanks to people like you I hope when he is 16 his path will be an easy one. thank you!
woodarron 1 year ago 3
@woodarron Thanks you very much. That means a lot. As I have said to many other veiwers, I would be happy to answer any questions you may have, Thanks again for the comment!
KCfan7989 1 year ago
i have the same condition as you and i would be horrified to make the video.. no offence......well i have it in my eyes skin and hair but i still have the same eye problem, but i hide it well haha!
Simplysweet0604 1 year ago
thing i wish is that albinos have vision like regular people. :S thats my only problem with being legally blind.
I'm pissed off with it.
tweety9102 1 year ago
I've just found out my 5 month old boy has ocular albinism with the nystagmus and your video has helped me understand and be prepared for what is in store for him. Thank you :)
sherree78 1 year ago
@sherree78 Glad to help. I'd be glad to answer any questions you may have. Thanks!
KCfan7989 1 year ago
I have OA too KC and thank you for posting this vid!
CheetahLearning 1 year ago
thank you
muaAngelCherry 1 year ago
@muaAngelCherry You're very welcome. :) Thank you for watching!
KCfan7989 1 year ago
X__X im legally blind and I'm guessing I cant drive either. Their like I need eye surgery! And that cant be corrected with surgeory. Which is what I HATE. Do you think I wanna be sitting at home cuz I cant drive? Like someone is gonna wanna drive me,
tweety9102 1 year ago
Thank you so much for your video. My 9-month old son was diagnosed with Nystagmus, mild, and they believe Ocular Albinism although genetic test to confirm is still a few months away. I love to see and hear how you are thriving. I hope my son is as positive and capable as you are. Thank you again.
dbryson7 1 year ago
Cool, I learned alot...
XxElmisterxX 1 year ago
i fet as if i was the one talking :) i completely relate to everything you said, if i strat writing i would probably not stop for 2 hours, so to make it short thank you soooo much for making this video, you rock!!! oh and btw you have an amazing voice =)
george04b 1 year ago
you did a rely good job. I have it too
plushbanana 1 year ago
i hv full albinism
nd it suxs
sasukewife15 1 year ago
i have the same exact problome
BIGBOie10001 1 year ago
Like, it's a retinal-resolution problem rather than a refractive-anomaly problem. Thanks for giving folks a better understanding of the pigmentally challenged. You go, girl!
pantyflash 1 year ago
@euch27 no. It may help a little, but not enough. You'd still be legally blind.
KCfan7989 1 year ago
Very informative video! That was a great explanation and you made it interesting too!
ps. Paramore is awesome :)
amerikanerin89 1 year ago
you're very pretty :)
ca280491 1 year ago
@ca280491 Thank you!
KCfan7989 1 year ago
I have a condition caused by bilateral atrophy of the optic nerves lie you I can still see, I just function in a bubble, yeah I now the question why don't you wear glasses? I hate that question and I am 27 I have known about my vision since I was 7 the question will never go away but just have a sense of humor me I am one big waling blind joke and I know it
yuyugeo 1 year ago
Have you tried bi-optics? They're glasses with scopes mounted on them. They're really helpful with seeing the chalk board...
minkaminka04 2 years ago
Hi Casey! I'm so glad I watched your video! I have OA too. And we have a lot in common, actually everything you said :p I'm 18 years old and I'm from Belgium. I could write a book but... for now I just wanted to react and I would like to get to know you better :) so if you have an emailadress or facebook account, please let me know. Thank you for posting this video, you explained it so well!
Greetings from Belgium.
ocalbbe 2 years ago
This has been flagged as spam show
fuulAlbinism! im kayla 15 ill b 16 in july*i am independent so xtra stuff n skool to c i say NO I DNT NEED IT.lol sometime i do but ill b ok=)everyone loves me..i come off rude to but no biggie.driven ugh no.sports tryed it dnt work out .balls flying scary stuff! front row n skool yeah its just dumb lol the glasses ? is rele famus we both have the same responeshaha very pretty? yes i am..shaken eyes is mild..so write me back lol we cud so b friends-)
kayla72794 2 years ago
fuulAlbinism! im kayla 15 ill b 16 in july*i am independent so xtra stuff n skool to c i say NO I DNT NEED IT.lol sometime i do but ill b ok=)everyone loves me..i come off rude to but no biggie.driven ugh no.sports tryed it dnt work out .balls flying scary stuff! front row n skool yeah its just dumb lol the glasses ? is rele famus we both have the same responeshaha very pretty? yes i am..shaken eyes is mild..so write me back lol we cud so b friends-)
kayla72794 2 years ago
Casey, Ocular Albinism is X-linked which means your mom would be the one that would carry the gene. Which means it's on the sex chromsome. Also, generally they believe in a female has it that it's either OCA1B or OCA2. I'm also a female with what I believe is eihter OCA1B or OCA2. I was also diagnosed with Ocular Albinism when I was three or four years old. I only figured out through doing some research on my only either mid to late summer or early fall of last year or so ago.
jesst2010 2 years ago
Casey:
I have a 5 year old grandson with OA. He lives with my husband and I. I am a nurse practitioner and was searching you tube for information on OA and came across your video. You did a great job about explaining how you see. I love the analogy about the film and the camera. You give great insight about how it is being a teen with OA. Thanks for all the information. Good Luck with your singing. Let's keep in touch.
jhunursie 2 years ago
Casey.
Im an ER doctor and I saw my first case of OA on my shift last night ( an X-linked form, passed on from mom to both her sons). Wanted to learn more and your video was my first hit. This is an amazing explanation of not only the condition but how it affects your daily life. You are a super cool and very brave person. Keep educating people about this, you would an excellent teacher.
sorenriley 2 years ago
h there i just stumbled across your legally blind video! i dont have any pathological eye coditions other than being short sighted! i am a orthoptist and not so long ago i did diagnose a 3yr old chilf with a hybrid of ocular albinism! i am impressed with the knowledge and good choice of words used to explain to people on how it affects you! nicely done
MrAlboks 2 years ago
Hah lucky you. Your Condition sounds like mine.
Achromatopsia.
fall4life 2 years ago
I have a condition known as Optic nerve hypoplasia and it sort of sounds the same as what I do!! We have a lot in common! You are an inspiration! I love sing as well etc...
Brittysings4theLord1 2 years ago
hi casey. i was in town today and i couldnt read the signs above the shops because i have poor vision lol. i went up to random people asking what they said lol. i looked so stupid
cartercool90 2 years ago
thanks for sharing. you don't use Zoomtext or Jaws?
It's live you doing what you love
Peace!
NaturalSol1 2 years ago
I went back to the area, realizing that everyone had gone into the nearby portable (I forget why - to talk about the next day or something). I got in, realized that I didn't have my glasses, and said, "Oh! I have to get my glasses! I'll be right back!" lol.
Umm...no. My teacher eventually sent someone out to help me (realizing that I couldn't see), and the girl found them right away. How frustrating. Heh.
Anyway! That's enough out of me! (YAY! FINALLY! lol.)
Great video! : )
VoiceOfAnAngel1 2 years ago
Ugh! Ran out of room!
Anyway, someone took me to the nurse's office. When she examined me, she said, "You have really pretty eyes!" (I have blue eyes.)
I felt dumb, 'cause I was crying, but it hurt. 0.-
VoiceOfAnAngel1 2 years ago
One more comment on this one that i forgot to mention: I'm bad at sports, but that's probably just 'cause I'm the intellectual type.
One time, in HS P.E., we were doing passing exercises with softball. I didn't bring my mitt high enough, and it hit me in the nose. Thankfully, it didn't break it, but it did knock off my glasses, and it did make my nose go kinda numb for a bit.
VoiceOfAnAngel1 2 years ago
Sorry for all the comments cluttering up your page! I just related a lot to what you said! : )
Now I'm off to listen to you sing!
Don't bother looking for any videos by me. I'm too shy to post any of my recordings of my singing, though I'm not too shy to sing along to my iPod as I walk down the street...? lol. Crazy person!
VoiceOfAnAngel1 2 years ago
For school, I always sit up front. For me, this makes a HUGE difference (since I have some usable sight in my right eye). I hated in high school when teachers had seating charts, and I'd have to go up to them and say, "I have to sit up front; I can't see unless I'm right up front."
I HATE having to ask people what something says; they always seem really irritable even when I mention that I can't really see. Aside from contacts/ glasses, I have no visual aids to help me.
VoiceOfAnAngel1 2 years ago
I'll never drive - partially because I have very little peripheral vision (thanks to the way my retinas are) but mainly because of my poor vision. I might meet the requirements to get a license, but I don't trust myself to be on the road, so I walk and take buses. I rely a lot on landmarks and hearing the automated voice say what street we've approached.
VoiceOfAnAngel1 2 years ago
I go into a fast-food restaurant, and I can't read the menu board behind the people at the register. I feel like my family members or friends get irritable or think I'm dumb for asking what they serve (if I've never been to the place or haven't been there for a while). If I'm by myself, I ask the person at the register or strain my eyes. lol.
VoiceOfAnAngel1 2 years ago
As previously stated, I'm unobservant even with the aid of my right eye. I'll have trouble recognizing people. People will be confounded that I don't notice them when they're standing a few feet away. "Didn't you see me waving?" Nope! I didn't know that was you! : P
Sometimes, (I don't know if this is cognitive or part of my visual problems) I don't remember where we're sitting at a restaurant or a movie theater. I have trouble going down stairs.
VoiceOfAnAngel1 2 years ago
I sit pretty much right in front of the TV, and my family members get bewildered and maybe even irritated at this. At least, they used to; now they're used to it. Sometimes, they'll ask me to move off to the side or sit back. Again, my mom's like, "You really can't see it that well from the couch?" No! I can't! : (
Irony: I'm a visual learner. Haha. No joke. I remember things better if I can associate a picture or something with it.
VoiceOfAnAngel1 2 years ago
I have pretty good hearing, and I love music. I love to sing, and I play piano. My sight-reading is horrible, and I stupidly just realized right now WHY. *Because my vision sucks, and I can't expect myself to group all those notes like one needs to sight-read...unless I lean in really close to the page, lol*
I'm unobservant, and my family doesn't really get that it's because of my eyesight. My mom's been the one to ask, "You need it that close?" when she sees me holding up a book to my face.
VoiceOfAnAngel1 2 years ago
Ugh. I just got that thing that asks you to type in the image (the code word) that you see so that you can keep commenting. I can never see those very clearly. Bleh. (Right eye to the rescue again!)
Along with being legally blind, my left eye is lazy. Most people don't notice it until I tell them about it, and then they're like, 'Oh, yeah! It kinda is!' I notice it in all my pictures. -.-
My eyes always look glazed in pics because I guess I have trouble focusing them. lol.
VoiceOfAnAngel1 2 years ago
I rely on my right eye to see for me. I've had people wonder (when I tell them about my left eye), "You're blind in one eye?" No, I just can't read out of it - and, if I cover up my right eye, I realize how little I see out of it. lol.
Apparently, premature babies are at risk for a lot more things than what I got. I ended up being an honors student instead of having brain damage; I avoided getting any debilitating things like Cerebral Palsy. I got off really lightly, so I'm glad for that.
VoiceOfAnAngel1 2 years ago
My cryosurgery saved my eyesight to an extent: I'm legally blind in my left eye and nearsighted in my right. I've worn glasses all my life; I even have baby pics with them. I've worn contacts since I was fifteen or sixteen, which I prefer to glasses, but it also means that people don't know that I have trouble seeing.
VoiceOfAnAngel1 2 years ago
I was born in 1988. In fact, my 21st birthday is coming up on the 28th of this month! Woot! Ahem! Moving along!
Retinopathy of Prematurity could have stolen my eyesight. What saved it was cryosurgery. Recently, I spoke with my dad, and he mentioned that that was what made him feel saddest for me when I was a baby in the NICU - seeing my eyes swollen to the size of golf balls. Meanwhile, the rest of me is this tiny thing. Eesh.
VoiceOfAnAngel1 2 years ago
I was born FOUR months premature. I weighed in at one pound, six ounces. (lol. I just typed "sex" instead of "six". Gotta love typos!)
I had open heart surgery a couple of days after I was born. I was also on a respirator, which almost shredded my lungs (which had Strep B or something in them, so they're a bit scarred, I think?) and possibly damaged my retinas - in addition to ROP.
VoiceOfAnAngel1 2 years ago
Rather than send you a message, I'm going to comment so that more people can read it. I have a lot to say, though, so I'm probably going to have to split it up into multiple comments! Be forewarned!
First of all, I love you. lol. Paramore in the background? Hell yeah! LOVE Paramore; they're one of my favorite bands.
Everything you said was so, "Yep! Been there!" for me. I'll start a new comment to explain my vision problems.
VoiceOfAnAngel1 2 years ago
my dad is legally blind and color blind and his vision is really bad. he can play sports though. he is a beast at basketball and can run for long distances so no it isnt that your legally blind its just that you arent any good lol
Jonathontheone 2 years ago
Thank you for your insight, from your prospective on OA, My 5year old grandson Jacob has this and has, from what we understand around 20/200 vision. He is in regular school and has already experienced some harassment as well as some help from classmates.
gragsdal1 2 years ago
my auntie is legally blind from a rare eye condition that makes the back of her eye bleed
cartercool90 2 years ago
Hi! I liked your video and thanks for uploading it! I do know what be 'legally blind' means. I' m visually impaired. I had a condition called Behcet disease which includes eye problems due to recurrent uveitis. So, the problem is exactly in my retina, in the central portion of it (mainly) and also in the peripheral part. That means that I share many of you difficulties. I don' t like 'incoming'balls' either. Have you ever considered swimming as an alternative? I assure you, it is great fun!.
crocfrog55 2 years ago
you're not rude, they are rude for doing that to you :(
MDkid1 2 years ago
i recently got an eye test and found out that i cant legally drive without contact lenses :'(
cartercool90 2 years ago
you can (in rare cases) have a kid with albinism if you dont both have the gene.
it can be caused by genetic mutation.
this is why some kids look different than
their families.
cartercool6 2 years ago
damn it i just lost everything i typed about my brother having regular albinism and how i know he has the same problem with people thinking he's rude cause he cant recognize them from far away. well nvm it looks like i just typed it all again. oh. i know people think this about his nystagmus and im wondering if anyone's ever asked it about you. people always ask if his vision moves back and forth cause his eyes do. its a legit question i guess but obviously no, he just has blurry steady vision
MyNameHasNoNumbers 2 years ago
Comment removed
MyNameHasNoNumbers 2 years ago
hey, I have the full albinism, the hair eyes and skin, my eyes are blue and I dont normally wear glasses so people just think I dye my hair white :P but my vision is 6/60 so its a bit better than yours but as you say doesnt make much of a difference. Im a boy and am 16 also but I live in Scotland.
xWHITExEAGLEx 2 years ago
I am so proud of you! This video is WONDERFUL.
LLPH1 2 years ago
Darlin, you are so adorable!
Suki278 2 years ago
ur fun
maluwelton 2 years ago
You are so freaking cute, & I can completely relate.
The other day I was talking to these people like, "Yo, I'm legally blind" & they were just trippin & going, "Dude, no way. How is that possible? You're not wearing glasses!" etc. & I pretty much had to explain everything that you said in your video.
This is going to be a biiig help for the people who just don't get it.
If you ever want to chat, I'd be happy to.
It's good meeting people who are in the same boat.
My facebook url is - uhhhlaine
x3elainee 2 years ago
I would like to thank you for this video. My baby girl was just diagnosed with OA, and it is hard to try to explain to people what sorts of things she can and can not see. Now I can give them some explanation from referring them to your video. It is hard to find many first hand info from others diagnosed with OA, so I was very happy to find this. Thank you for taking the time to create this video.
Travis
ravenflight20000 2 years ago
Hi, OC runs in my family also. I'm a carrier & my hubby is not. My son's have a 50/50 chance of getting it. My son who is 5 does have it. We are waiting to see if my daughter who is 1 is a carrier. They see a ped opthamologist annualy. Not quite sure what my son see's. My dad is legally blind & was able to take courses & wear special binocular glasses to drive in his small town. Every case is different, but it was good hearing your story. My son is just old enough to explain his.
TheLindsley4 2 years ago
your too cute. I'm afraid of balls too always have been
AmericanIdolQueen84 2 years ago
I have myopic macula degeneration, and am legally blind. I do wear corrective lenses, without them all I would be able to see is colors. I have lost my central vision in my right eye, and though I have central vision in my left eye, the vision I do have is quite poor. I don't drive, and like you, I love to read. I have to use a magnifying glass or read extra large print, with bright light to see. I have a question....Do your eyes get red, sore and swollen from eye strain?
Lorra41 2 years ago
I too have OA & nystagmus. 20/200 vision without corrective lenses, and about 20/60 with. I wear RGP contacts or glasses. I too was always told that I'd never drive, wouldn't be able to do or see anything, but I refused to believe that. There's so much they can do now, I just kept on searching until I found the right doctors. They can't treat the retina problems, but they can treat the nystagmus, which can improve the vision some. I'm living proof of that. Thanks for the video my fellow albino!
lilblondehooker 2 years ago
im legally blind in my right eye, i had a baseball thrown in my eye which caused a giant macular hole.
MMassyrian519 2 years ago
If glasses didn't work for me I know I'd be legally bilnd. My eyesight is terrible so terrible infact that my eyesight can't be perfect even with glasses, but it's much better than seing everything in a color-mush-fuzz. I can relate to you (Especially when I loose my glasses) And I wouldn't wish bad eyesight on anyone... it's so annoying.
Teslaclawer 2 years ago
Casey, great video! I'm 54 with OA and can relate to almost everything in your clip as well as the posted comments. Not driving IS a big thing in many places, but consider living somewhere with a good mass-transit system. (I wish I did.) I can't wait for the price of e-book readers to come down. (Make any book large-print, yeah!.) Binoculars at sporting events, yes, they get heavy after awhile. I'm guessing your eyes look so dark on video due to the lack of pigment in the iris.
dkault 2 years ago
you have a great sense of humor...my aunt has it too
TrishyxLou 2 years ago
Ah, you seem hyper... I love ya! XD
Great video, makes me want to go listen to your singing :3! *faves*
AnimeShineChihiro 2 years ago
Girl You are AWESOME!. I also have OC and am 45, yes old enough to be your mom... but we have a connection that not many people understand. Thanks for sharing.
pound36 2 years ago
Hi Casey, love your video and think you are quite funny. I am 27 and I am legally blind also. I get annoyed with the glasses and contacts question too. Oh yeah and I get annoyed when people say hi and you don't know who they are LOL.
jcastellano822 2 years ago
Hey I am also Legally blind. I have 20/400 in my right eye and 20/2000 in my left. I also have nstagnis (SP?) (really not sure how to spell it). But I have Toxoplasmosis.
I can relate to everything in your video! If you want send me a message sometime on AIM: Starphoenix87 !!! Looking forward to talking with you! Oh and about the nstagnis (SP?) sorry cant spell lol. I notice it a lot when I am nervous or upset messes up my vision more too.. Dunno why just happens.....
Talic29 2 years ago
i share this too both the oa and nystagmis
Whitedevil91 2 years ago
Comment removed
Menagan2 2 years ago
Great video Casey,
Your video is great, it not only gives someone a great insight on what its like to have Ocular Albinism, but its also very informative...
I too have OA, I'm 25 yrs. old and have dealt with it my whole life... The biggest challenge for me is the little things, like detail...
SonnyBoy311 2 years ago
Your comparison to the camera lens and film is pretty good, but in this day and age I compare everyone to having these new HD 1080p flat screen tv's as eyes whereas we have eyes of a tv in the late 80's early 90's...
We get the picture, but its just not as great as everyone elses ya know...
The best way to inform people I beleive is letting them know what u can and can't do...
SonnyBoy311 2 years ago
That's a pretty good analogy. lol.. People hear "legally blind" and they automatically assume we can't see squat.
lilblondehooker 2 years ago
I too have some problems like...
---Not noticing someones scars or wrinkles immediately...
---Being labeled "rude" for not waving or noticing someone as you noted, due to the fact we just plain didn't see it lol...
---My biggest problem, not being able to drive, it affects your life in so many ways, from work, school, relationships, and so on... Not to mention a love for cars, n' not being able to drive them...
SonnyBoy311 2 years ago
---Miss the obvious sometimes, "if it were a snake it woulda bit you" type deal... hopefully it never is a real snake lol...
---Menus at fast food places like Mc Ds or Taco Bell, thank goodness for pictures, cuz if you dont know the menu, you may be stuck sometimes getting the wrong thing or paying more than you wanted too
SonnyBoy311 2 years ago
For ppl with OA, its a must to keep a positive attitude, because in this day and age we are a step behind, but there are so many things we can do... You learn to adapt, and you make dew There is no need to put up fingers and ask how many are up, I always return the middle one up and ask how many Im holding up
SonnyBoy311 2 years ago
I feel like my OA isn't as sever as yours (Caseys), I hated the overhead in school but made dew with normal test and could read most of the stuff on the board, however I'm illiterate when it comes to reading cursive handwriting, and I did miss a few notes through the years in school
SonnyBoy311 2 years ago
ahh! I can't read cursive either! Glad to know you understand!
KCfan7989 2 years ago
Yes, cursive writing is so difficult becuase everyone makes their letters differently. I just tell people to print if they want to write soemthing down for me.
jcastellano822 2 years ago
This has been flagged as spam show
I made it though, I am a college graduate Im able do yard work, can actually play pool fairly decent, cook, clean (may miss a spot), use a computer, and play video games... I was the 2009 Gillette world champ in Nascar 09, and it took a great deal of concentration and skill, along with a big TV lol... Though I made that incredible feat, sometimes tasks that involve a lot of eye hand coordination can be quite difficult
SonnyBoy311 2 years ago
I hope this post helps, and if it doesn't well refer back to the vid, because its pretty good...
ALSO, genetic engineering could be our key to full vision, I've read of a study on lab rats that were able to grow pigment in their retinas, so now that Obama and the fed. gov. have lifted the stem cell ban, our dreams may come true...
SonnyBoy311 2 years ago
Comment removed
SonnyBoy311 2 years ago