Why I Don't Look ALBINO but Do Have ALBINISM!
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- Опубліковано 17 лют 2017
- I've seen a few comments in regards to people wondering why I don't look like their stereotypical image of a person with Albinism. Let me address all those comments with this video. You'll learn about some simple difference between Ocular Albinism, and Oculocutaneous Albinism.
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Ok - This video is a bit old but let me clarify Albinism is also lacks pigment in the eyes thus causing visual impairments most often than none. Meaning just because someone has less melanin doesn't mean they have albinism. I have Ocular Albinism as mentioned - I have lighter hair and skin than most in my family but also I'm legally blind and that's non-correctable due to the lack of pigment in my retinas.
Can u pls send me ur whatsapp number , i need ur help
@@kellyelias1351 Blue eyes lowkey = Ocular albinism. Or lil to no melanin in the eyes. Bc there is no actual blue pigment in the eye. They only look blue due to the sunlight color spectrum effect.
@@kellyelias1351 that is incorrect on a lot of levels. White people can have albinism, but most white people do not have albinism
My daughter has ocular albinism. Her dad and I are asian. When she was born, I noticed immediately her light skin and hair color. One nurse at the hospital did notice, but no one else questioned it, not even her dad (perhaps because older brother and dad’s side of the family have light skin.) But I had a strong instinct that it was something else, so I searched google and speculated she has albinism. I was especially convinced when at 3 months, her hair and eyes started getting lighter and her eyes wiggled side to side. Yet, still no one believed me! She doesn’t have the stereotypical milk white skin/hair so my husband, family, and friends thought I was crazy 😜 My daughter’s pediatrician was also very skeptical. But it was finally confirmed when we brought her to the ophthalmologist and geneticist. Anyway! When my family and I are out in public, people stare ALOT, probably trying to figure out why she’s not asian like us yet still looks like us haha. She also doesn’t look albino and has dark brown hair and light skin and light eyes that also change color!
@@kellyelias1351 there is a difference in lacking melanin and having less than someone else. A Chinese person or white person with a light skin colour is not necessarily albino just because they have less melanin than a black person. Albinism is a specific genetic defect and traceable in your genetics. It often combines lacking melanin and having eye problems. People with less melanin do not have more eye problems than people with more. Albinos do have more eye problems. A white person’s lighter skin colour is because of a completely different genetic reason and there is a whole other reason for East-Asian people. Having albinism is a collection of differences in your genetics and it presents itself in the same way across different ethnicities and races.
You almost convinced me in the beginning 😂😂
Convinced you of what, "in the beginning"?
E. M. Sturdivant Gallieshaw probably just about the blonde hair lmao
The reason your eyes "change color" is because people with blue eyes don't have pigment in their eyes the way those with brown eyes do. Their eyes look blue because of how light refracts off the structure of the eye. This is similar to how we see the sky as blue. There are only two animals in the world that actually have blue pigment, both are a type of fish. All the other blues you see like birds are structural. In birds like bluebirds or blue jays, bubbles of air get trapped between the feathers and refract light in the blue range. Other birds the actual feather refracts the light and you get iridescence, like with peacocks. How does green happen? In birds, a very few actually have green pigment, but it's pretty rare. Green is either from iridescence or the bird has yellow pigment and the trapped air, so you get blue refracted with yellow which gives you green. Human green eyes are the same, the melanin is yellowish making your eyes look green.
Anyway, all that to say is that in different lighting situations, blue eyes can look like different shades. Less light, and blue eyes look darker, they can even look brown in photographs taken in very low light situations without a flash. So, your eyes don't change color, but people's perception of the color does change
If I remember there was also a blue pigment found in a mega rare species of butterfly
I’ve seen my eyes change to a Green-blue mixed colour that some people call (turquoise) before. my eyes seem to look black when I get cross. my eyes are actually dark blue
My 2 sisters Are albino. My brother Blonde hair And blue eyes. I cant see myself hes been classed As Albina. When I was little My hair was a medium Brown With Natural blonde highlights through my hair and it And I do have dark blue eyes.
Its called albinism
I have no pigments in my eye
My grandson has OA with nystagmus. I’m on a learning mission to help him.
I'm in the same situation. I have albinism, but don't look albino. I thought I had Ocular Albinism my whole life (like you) but I later found out I had a rare type of albinism called Hermansky Pudlak Syndrome. Have you heard of it? I get accused constantly of not being albino. It's annoying to say the least haha. Great video! :)
HowCaseySeesIt you'd be so great to all collab together about misconceptions around albinism! When James said there are two types there really are three--OA, OCA, and then people can have OA or OCA with HPS (and there are NINE types of HPS recognized--which is crazy!). I really think they're going to learn so much more over the next twenty years they don't know already!
Same!
I have the same form as you! Also Ocular Albinism with the form of Hermansky Pudlak Syndrom :)
If you don't mind me asking, how did you find out it wasn't just ocular albinism? Just found out my son has ocular albinism and still needing to see specialists about it all. He's also very white so I don't know if that's just genes or more. It's all so confusing as it's not straightforward.
@THE TRUTH IS HIDDEN IN PLAINSIGHT you're wrong
Thank you so much for your video ! it makes me feel way better about my albinism. I was only diagnosed last month (I'm 20) because it's not very obvious. I have super blond hair and very light skin, and my eye change color between blue-green-gray as you, but luckily they don't shake ! I had suffer all my life of the sun with really knowing why... now it's kind of a relief to know the reason.
and yeah, we all share this love-hate relationship with the sun xD
Great watching your video. My toddler was diagnosed with albinism from birth, I'm actually watching videos to help with her and trying my best to see how she sees.
At this age, she's a really tough cookie lol she runs around with the kids, wants to go outside and swing high she watches the TV and laptop her favorite is peppa pig. But I've noticed her going real closer now to see, I'm hoping after her appointment with the Dr. For her glasses it helps a bit, I don't ever want her to feel like an outcast, and I'm trying at this young age to encourage her that she can do anything, your not different from anyone.
But I'll watch the video you spoke about earlier in your video, keep posting, it's great. Thanks again
Found your channel because our 2 months old has been diagnozed with ocular albanisim. We were told he would be blind and never be able to do normal activities, and that broke our heart. After seeing some youtube video I'm glad to see the brave spirit and happiness you all share and the fact that you dont let it stop you from anything. I will help my son in everyway possible but you gave me a lot of hope. Thank you for that!
Love listening to you talk to us. New to the research and glad I found you. Thanks for sharing.
I have ocular albinism and I’ve never et anyone with my same condition. It’s awesome to hear someone else that has it and shares what we we have and why we look at things at a certain angle. This is awesome
Well to answer your question... I don't have albinism, but I met someone who does this year in my accounting class. He is "very white" and also legally blind, but he seems to see averagely sometimes while other times he seems to struggle (it fluctuates). I just never know what life is like for him and I understand everyone is different. In fact, I found your channel through Tommy Edison. On his channel, I had asked a question about legally blind vs blind and you helped answer it in his video. I am glad to have found your channel because I can understand what life is like for more people.
This was really interested. My husband walked by while I was watching this and he even learned something knew. I love it. I love sharing your videos and helping to bring awareness.
I’m 16 and have ocular albinism, no ones ever properly informed me about my condition and the features of it, so this video was especially helpful in giving me knowledge about it. It’s also very reassuring that I’m not the only one who tilts their head because that’s something I’ve always felt self conscious about.
I catch myself tilting my head all the time. I gave it to thinking because I have a fused spine I was doing this, until I read these posts. Makes sense now.
My daughter tilts her head forward too when she is trying to look at something far away!
It's amazing how we can see one movie/tv show with a person with a condition and then think we know everything there is to know about it. I am not saying my comment in a demeaning way I just get it all the time from people since I am in a wheelchair and they want to compare my life in a wheelchair to someone else they saw on tv and think we all are the same or feel the same. It still baffles me (in a good way) how different another person with the same condition as me can be from me. I love seeing how uniquely different the masterpiece we are is made.
Living Able ok
I personally hate the fact that albinos are compared. It makes me feel like trash and I hate it. Being bullied sucks because I have no one to go for help. I did recently find this girl in school that tries to lift me up in my depresión caused from me being albino.
Really nice vid,James! U content makes huge difference on UA-cam,give access to information about important subjects as well give people like u or with other special needs a space to inclusion and discussion. Here in my country there's an island where just live people with albinism, it's cool.
I think this video is so cool! I didn't know that much about ocular albinism until now. I do have albinism myself; I have oculocutaneous albinism (it took me fourteen years to learn how to say that, lol) and I think it's cool that we're similar and yet different! my hair is really light yet I've seen people with albinism with lighter hair. my eyes aren't blue anymore - they changed to a deep hazel. I do have pale skin though hahaha
Yes, white people can have albinism ... but is rare
As an albino myself,i m from India and in my late 30's. i work
in IT. as you are aware it was a tough path, but i have made progress. i
am married with 8 Year old boy . (my son has no albinism).
cheers girl. thanks for spreading positivity. Never give up on yourself.
we are self made individual.
Regards,
Mani
Do you know tamil
I'm glad to find your videos! I also have Ocular Albinism so it was great to her the story from someone else that was so relatable! Thanks for sharing! :)
Yessss i have ocular albinism too!! i never meet anyone with it, and i definitely the whole "you don't look albino" thing lol. I'm giving a speech about it at my school tomorrow and i was looking for some inspiration for how to structure it, thank you so much for this video :))
Hey I think your channel is great! I have oculocutaneous albinism with nystagmus, and I wear glasses, but my vision is still no where near 20/20. A lot of people don't understand that even with glasses, my vision is still impaired, (and my visual acuity varies depending on the severiry of my nystagmus at the moment etc) and they expect me to function like someone without a vision problem. I also get a lot of people telling me I need to go out in the sun more cause I'm so pale...people can be ignorant sometimes, but when they're rude about my skin etc I just look at them and be like "I have a disease...." usualy shuts them up lol! I don't mind nicely explaining my condition to people who are polite and genuinely curious tho :)
Rachel Diken I'm with you! Same here
My baby son has ocular albinism. If one more person says oh but glasses ill be getting punchy :)
This was great for my little brother with ocular albinism, he has the exact thing as you where his eyes shake
I wish UA-cam was around when my husband was a kid. He has ocular albinism with nystagmus as well. Growing up in the late 70’s/early 80’s in a teeny tiny town, my husband and his family and eye doctors didn’t know a lot about his condition and kept him pretty sheltered and he was taught he couldn’t play sports due to his eyesight. I brought him out on the tennis court and turns out he’s pretty great at tennis. I intentionally dress our kid is neon swim shirts and coats/clothing so my husband can see him a bit better from a distance. Thank you for helping to educate the UA-cam world on OA so others don’t have to feel so alone!
This is a very interesting video. Unfortunately, not that many people realize that each disease has various forms that have various effects. I have Senior-Loken Syndrome; a degenerative eye and kidney disease. It is a combination of Leber's Congenital Amurosis and Nephronophthisis. Most people have just one of the conditions, but I have the two for one deal. I know people who have either of the diseases individually, and everyone had their illnesses takes different paths. I have ran into people who assume that I am completely blind and need a kidney ktransplant right away. I might not go completely blind, and I hopefully will not need a kidney transplant for another few years. This experience with a chronic illness has taught me to not just make assumptions. Sorry if I am rambling or ranting.
Courtneylovesreading411 that's sucks
XenoNova Gaming
I would not necessarily say that having Senior-Lokin Syndrome "sucks", vut of course it has its ups and downs. I am thankful for it because I have been given a wonderful perspective on life that most teens do not have. I thank God for the blessings that I have, and he gives me strength to keep fighting.
Thank you, for explaining some of the diferences between the two.
Great video! I have oculocutaneous albinism (OCA) and I think it should be pretty obvious to people since I'm Black but a lot of people think I don't "look albino" because they assume albinos have white hair and red eyes. I've met a lot of people with albinism and none have red eyes. A few have a kind of violet color but most seem to have blue eyes, green eyes or brown eyes. Mine are green-blue and seem to change. I've met a few people with ocular albinism too. It's interesting too that some people who have OCA certain types do get more color as they get older as well. I think my hair has gotten slightly darker.... No sun for me! Lol
yes, I have OCA too, and my hair was much lighter when I was younger. it was almost platinum/white, but now it is a little more blonde.
yeah, this red thing i don't get either. like, albinism is lack if pigmentation, there's no reason for eyes to be red. the red is just the same as with people with no albinism when you take pictures with a flash, you can see the red retina. people with albinism just have less pigment so the red shines through easier. but yeah, people are dumb.
Know this is old but I have OCA1a and when I stared 7th grade the teacher for my parallel class apparently said (according to my friend) that I have red eyes 🤦🏼♂️
That's interesting
@Chloe cosmina - _As I understand it,_ all forms of albinism are due to recessive genes, which simply means both parents had a copy of gene that causes albinism _and_ that they both passed that recessive gene on to their child.
And for what it's worth, "Is it because your family went to mix race with the whites..." is a very offensive way to ask the question. (Based on the rest of your question, I don't think you meant it to be offensive. I'm pointing it out so that you can try to avoid using that type of phrase in the future.)
Loved hearing your story very interesting and I hope you're dealing with things. I was diagnosed with mild ASD and ADHD as a young adult and have been interested in all kinds of disabilities and conditions. I struggle with reading not that I don't understand it but my attention or lack of forces me to read something and take nothing in. It's like there's a wall between my eyes and my brain. I have recently noticed and can remember experiencing this for many years that when I'm focussing and especially straining to read or write my eyes will shift from side to side very intensely and Im unable to think or read or do anything just for a moment, maybe a few seconds. I believe this is a very mild form of Nystagmus. Nobody has ever noticed this in my childhood so I wonder if it developed in adulthood.
Nystagmus can very well be developed later in life. It could be a number of things. I would consult an eye doctor for confirmation. Thanks for watching Ciarrai!
Hi James, I've got Oculocutaneous Albinism. Would be great to have a chat sometime about it if you're interested. I love the description of what nystagmus feels like. Mine is basically a horizontal nystagmus, but nevertheless, your video description is really helpful to express to others what I see. It's such a hard one to describe. Totally agree with you on my relationship with the sun, it's really a love hate relationship. I tend to avoid it, similarly to a vampire haha.
You did amazing, I have Oculocutaneous albinism OCA2, but know other people with OA and I think it's great your spreading awareness about OA. Many people really don't understand what albinism is in general, but a lot don't know about OA. Much love!!
What the difference between OCA2 and ocular albinism type 1? My son has that. And my daughter...
I have a question about the vertigo you experience: Twice in my life I have experieced vertigo, and found it very difficult to cope with! The room was spinning and I felt sick, and could only sit still while it lasted. How do you cope with your vertigo? Would it be because you have had it life-long that you deal with it (i.e., are not clutching the nearest stable surface in panic!) or is it probably a different form of vertigo? Thanks.
Thank you for making this video! My 5 month old son was just diagnosed with Ocular Albinism and Nystagmus. Your videos are a great tool for me when I’m trying to explain what he has to family or friends!
I wondering if your son had an MRI. My grandson has Nystagmus (and after doing a lot of research I think he has Albinism as well, though has not yet been diagnosed). The ophthalmologist ordered an MRI, but he is only 6 months and my kids are not comfortable having him put under. How was your son diagnosed? What, if any, are his treatments? How is he doing? Thank you!
@@ckgonzales6743 my son didn’t have an MRI due to the ocular albinism diagnosis ruling out the likelihood of a brain tumor causing the nystagmus. We saw a pediatric eye doctor who could see the spots of missing pigment in his iris with her tools so she suspected the Ocular Albinism. We then had genetic testing done which confirmed the eye doctors diagnosis and also that my has Ocular-Cutaneous Albinism so he is lacking pigment in his skin as well. He is turning 4 years old in a few days and is thriving. His nystagmus has lessened as he has gotten older due to eye muscle development. We only notice the nystagmus now when he is tired or lost in his thoughts and not focusing on a particular item. He wears glasses that have progressive sun glasses in them to help with filtering sunlight when he is outside. And he also wears a hat and sunscreen when outside. He has adapted well and is a typical wild 4 year old boy lol
@@cortneybowles9067 thank you for your reply. My grandson saw the pedantic ophthalmologist who diagnosed the nystagmus and mentioned the lack of pigment (noting that she had never seen it in a white baby), but she never even mentioned the possibility of albinism. I've been doing research and it really seems to me that she missed it. I'm hoping that the dermatologist he sees this Friday will have some insight. Glad your son is doing so well.
I'm glad to find your channel. When my son was born with nystagmus, they were going to order a MRI until they learned my brother had it too. Despite my brother being 50 years old and going to various ophthalmologists his whole live, he had never been diagnosed correctly, probably because he has black hair! He and my son went to the National Eye Institute and were diagnosed (through vision and gene testing) with ocular albinism. My son is five now and thriving. However, after watching your videos, I realized how big of a challenge he is having, and that there are many things we need to learn about how to better support him. Gratitude to you, thank you.
Man that is so cool!!! you're eyes change colour woooow, I learned alot you got a new subscriber.
I can relate so much I'm mixed so half black, half white and I also have albinism so my skin is very pale but I still have some pigment and my hair is really thick and curly and the colour is kind of like yours but just a little lighter and sometimes It's like a golden blonde (when I was born it was basically white), I have blue and yellow eyes that sometimes look grey. My point being is that I was really confused about the whole situation because no one ever explained it to me I don't really look like I have albinism either, people always just assumed I was full white and whenever I tell people that I'm half black and have albinism people normally just laugh because they don't believe me which is really annoying but anyway I appreciate you making this video thanks a lot💕
My crush have albinism to be honest
What’s ur snap or Insta?
You're amazing. I really appreciate your video. This is something I'm gonna share, most people tend to think I'm lying when I say I have Albinism, just because my facial is dark.
Thanks for making these vids
Shain-Camryn Miles what is albinism?
I’m so glad I found this video. Every time I try to explain my condition someone says “well, you don’t look albino”
It’s very frustrating
As someone who also has albinism, I was always curious why your hair and skin always looked a lot darker than mine. Any other people I've met with albinism seem to look just like I do so this was interesting to watch. In fact, finding you through Tommy was actually a really exciting moment for me. I hadn't seen anyone else on UA-cam that is legally blind or albino so seeing someone in the same situation as myself make something of themselves on here and inform people was a really great moment for me. Keep up the great work James! (Sorry if this isn't really very thought out or I'm repeating myself.)
I am so excited to find your videos I might puke! OK that was a bit intense, sorry. I have CN and possible OA as well (they didn't ever test my nystagmus to see the cause when I was a kid back in the stone ages) but I'm so excited to watch everything you have to offer, to learn some of your accessibility tricks, and to employ a few. I am a non driver in a small city, and feel trapped every moment of my life, so your videos give me a momentary feeling of freedom! Keep on, man. Keep on.
my son has albinism and we found out when he was 2 months old because of the nystagmus. You did a great job explaining it to anyone who doesn't know. Thank you
Dude I have never ever found anyone with the same type of ocular albinism as me! It's so cool yo! I can relate totally to what you're saying! Wooooo
hey james don't know if you remember me from high school but just wanted to say it's great to see how far you've come and the great things you've been doing! keep up the great work :)
I find this fascinating! All the good stuff you've created with your life and how independent you are. I don't really think of you as having a handicap although it is a hardship. I have 20/20 vision and a decade on you and I'm not as independent as you! I like the ginger beard too. It's good that you had your brother growing up and perhaps could be of some support. What is the cause of this? Is it hereditary? It would be great if your brother and you could do a video together and share your individual experiences! Thanks, great channel
Thanks for watching and the feedback. Yes, it was hereditary, parents carried the gene. Thanks again for the kind words!
I also have ocular albanism with a nystagmus from birth. I have never noticed the shift in vision, but my eyes do change colors. I am legally blind and have retinal detachment which has caused a severe decrease in my vision. I live in New Mexico so we have a high amount of sun and I have found that the use of a sumbrella is a must for dessert dwindling. do you primarily use a cane to aid your mobility?
Just ran across your Vid, and it is GREAT. I have OCA and have had a heck of a time explaining my situation. Comments are great and helpful, too, as we all think no one else has this. One of the funnier aspects is that I carry 'menu binoculars' with me so I can read menus at fast food restaurants and drive throughs!
"yeah, everything's been shaking .....for the past 21 years" LOL i love you.
I have a report in school so I was able to find your channel. Thank you for the info. :) new subscriber
I do have ocular albinism from birth with a nystagmus. My hair seems to change color throughout the seasons. Is this due to the albinism perhaps? Come to think of it some people have mentioned my eyes changing color as well. Usually they are blue but sometimes green.
Hey some people have to go to the salon to chair their hair for the season. You get to save some money :P okay my lame joke. I am a wheelchair user :P Hopefully you have my sense of humor lol
Hair changes color, lighter/darker, depending on how much sun light it get exposed to. So it is common for hair color to become darker in the winter months, whereas it will be lighter in summer months.
3 worst things about having ocular albinism
1. Cant drive
2. Couldn’t read the board at the front of the classroom
3. CAN’T CATCH A F*CKING TAN
😂
I have similar symptoms to what you describe. When I was a child my hair was white blonde and my eyelashes and eyebrows looked invisible. My eyes change from day to day and I have so many issues with my eyes. When I was a child my parents always told me I was allergic to the sun so I have just always thought that.
Hi what color is your hair now ? Because my baby was born with blond hair . And I’m wondering whether she will change her hair colour later .
Thank you for making this video. I have nystagmus and albinism and no one ever believes me because my hair isn't white and my eyes aren't red. It's nice that you're informing and educating everyone on this topic!
Since I was born I've always had vision problems (all in both eyes: astigmatism, nystagmus, and most recently diagnosed with cobblestone degeneration). The nystagmus primarily affects me when I close 1 eye or if I see a fast repeating pattern (ex: a train moving by). As you can imagine this made eye exams extremely difficult and for many years I had to go to a specialist rather than a normal optometrist. On one of my checkups the specialist noticed something n my eyes. They sent me for a test and low and behold I had Albinism Type 2! I really don't have many of the visual signs (similar to what you described: slightly pale skin and blonde hair that has darkened to dirty blonde over the years). This being why it took about 10 years for it to be diagnosed.
The funny thing is though my family just forgot I actually had it for a long time. Whenever I said it they just responded with a "Nah you don't have it! We got you and your brother tested and you're just carriers of the gene!". Over time I started to believe this and that maybe I had just misunderstood the doctor as a child. The other day I found my assessment documents for ADD and there is was clearly written "Sarah has Albinism Type 2". Now I'm just kinda looking things up to learn about and see why I can have it without looking like I do.
I have albinisom and I have really bright hair but I put some brown in it now ❤ I loved this video ❤
hey very nice video well said thanks for sharing I don't have albinism but I am visually impaired I have nystagmus that's one thing I have in common with you I'm totally blind in my right eye that was due to a childhood injury I have glaucoma and in my left eye I have restricted field of vision less than 20 degrees which means no peripheral vision so therefore no I cannot see out of the corner of my eyes like a normal sighted person would I also wear glasses progressive lenses bifocals but still my vision does not go nowhere near 20/20 it fluctuates between 20/200 - 20/80
Great video. It's nice to see someone talk about OCA who basically has all the same issues or quirks that I do.
I like my quirks!
Hey! I love watching your videos. I have albinism and while I'm much paler than you and have much lighter hair is seems like I see more than you do. Although, you have said things in your videos that have made me realize there's a reason to why I do certain things and I would have never thought it was because I was albino...so thank you for allowing me to learn more about myself.
Hey James, I have Ocular Albinism as well. I really liked your video and found it helpful.
I also have Ocular Albinism. I have one sibling and he has it too. But we both look different in our coloring. My coloring is just like yours actually, except that my hair is light brown. My brother has lighter blond hair, but his eyes are a little darker than mine and have a hazel coloring, while mine are blue/gray. Also his vision is quite a bit better than mine. He's even able to drive with these telescope glasses he got from his doctor. It's very interesting how different siblings with Albinism can be. Oh and we're Hispanic, so we both look very different then the rest of our family. We see well enough not to need a walking cane so it's often difficult for people to understand that we are "legally blind" not completely blind. And like you said people who are familiar with Albinism are not aware that there are different types of it. That's why it think it's really cool that you're bringing awareness to our type of Albinism. Well done. :)
"Is that Ralph from Wreak it Ralph?" My son asked me this while watching your video. ✌🏻
This video seriously helped me so much, I have ocular albinism and I've been so confused with myself, and if I can actually call myself Albino. I don't tan, I'm so pale, my hair was white blonde when I was younger and it got darker as I got older, I have shaky eyes (don't know how to spell the word, lol) you're literally the male version of me and it's so cool.
I like to say I'm a vampire and I HATE the sun
I have OCA I've been able to get my vision to 20/70 with contacts and also have nystagmus. When I was growing up my vision never shook even though my eyes did. But it happens now. I even get told I don't look albino with crazy fair skin and yellow blonde hair. I've met quite a few people with albinism, NOAH is a great website to check out. Great video and best of luck to you!
This was very informative, thanks.
Ha - I have ocular albinism - People sometimes freak out over my eye color - but not all of the time. OMG, my eyes change colors all. of the time too. First time I've put it together after I heard your comment. P.S. I'm a graphic designer and photographer! Just subscribed. I've learned a lot about my condition via facebook groups. Cool supportive group of people. I feel connected with people all over the world now :)
Thank you for making this video. My 6 month old son just got diagnosed with ocular albinism with nystagmus and sun sensitivity. It is nice to see what a future with that might look like instead of just living with the panic of complete unknown.
Albinism is a beautifully unique trait of the human condition. Everything will be fine :)
Is it possible to have albinism and not know it until adulthood due to “not looking albino”? My parents neglected me a lot(they were abusive in many ways and refused to take me to the doctor often unless I was extremely ill) so I didn’t go to the doctor much. I’m 27 and I still don’t go to a doctor often unless it’s serious because I am poor and can’t afford it. An online friend recently asked me if I was albino because of vision issues I seem to have(some examples being but not limited to: terrible eyesight that doesn’t seem to improve much even with my glasses, both involuntary nystagmus and voluntarily nystagmus, and physical pain in my eyes anytime I step outside when the sun is out-even when wearing sunglasses), health issues I’ve had(primarily with my kidneys and lungs), along with my appearance as well(very pale but lightly freckled skin that burns easily and quickly but never tans, blue eyes, and I sent them a baby pic once where I had white hair, although my hair is a dirty/dull reddish-blonde now). After my friend asked me that I told them no since I’ve never been diagnosed with something like that, but since they asked I’ve been trying to do a lot of reading on the subject and I’ve noticed I that some of the symptoms do appear to line up enough that I’m a little concerned about it. But it seems weird to me that no one, my parents or previous doctors, would notice that if I were to have something like albinism. I’ve tried googling if people can be diagnosed with albinism later in life but haven’t found much helpful info about it. I’m curious if I could have something like albinism, but since I’m financially struggling don’t want to waste so much money to go to a doctor appointment if they might take one look at me and laugh at me or tell me my questions or concerns are ridiculous without genuinely caring to listen to my concerns. If it’s possible and I know they might take the concern seriously though I’m willing to go to a doctor, I guess I’m just afraid of wasting money during my financial struggles and being ridiculed for it too. ^^; Thank you for the video, it’s very informative!
I'm so happy I found this video I have Ocular Albinism and its so hard trying to explain it to people and you just explain my ENTIRE life Thank you so much
And I actually do hate the sun a lot 😐
I know four people with albinism from a summer program and I'm close friends with two of them. I didn't' know much about albinism before I met them only what I learned from my albino rabbit
Your video thought me a lot about a new member of my family 😍thank you
Googled partial albinism because I have one rabbit with full albinism and one with partial albinism.
You gained a new subscriber. 😊
PS: Keep making vids!
I have ocular albinism and brown hair and eyes.
Is your eyesight okay?
@@Alwaysbeclosing1774 Define ok. My vision is 38/6 (meters). Could be worse.
@@ryutkin I just meant like can you drive and walk around alright. Were you able to play sports and stuff growing up. I'm asking around to people that have this because i just found out my 8 month old baby boy has it. So far he's passed all of his vision tests that he can do right now. Hasn't been prescribed baby glasses but is sensitive to bright sunlight outdoors.
I can walk and run alright. Sports with balls are a bit of a problem. Can't drive because the law in my country requires a minimum vision of 12/6 to drive.
Yessss I'm over the moon with this channel. I have ocular albinism too and always get asked why I don't look like an albino. I don't have the vertigo trouble with the nystagmus like you do thoug, that sounds terrible.
I have the exact same condition as you do! I have a head tilt to my right because one eye isn’t stronger. Everything in this video I kept saying “omg yes same here” it’s nice to have someone with the same albinism
Hey, great video! I am convinced my younger brother and I have albinism, it's just never been confirmed by any doctor or anything. People have always thought I was albino, but again, it was never confirmed. I have very very fair skin, super blonde hair but with a yellowish tone to it (and one streek of brown, I know.. It's super strange haha) and blue eyes. I can't get a tan at all so yeah I don't like the sun haha.. I have to wear Sunscreen around almost every day. I don't have any eye problems tho. My brother has more problems with his eyes but not the moving or anything. I am still convinced I have some sort of albinism but I can't come across people that are 'like me'. Also, my brother has the same ginger kind of beard like you.
I am a girl with ocular albinism - I asked my doctor about this, and she specified that I probably have the rare autosomal recessive variant of ocular albinism.
My vision is fairly low, but I can still function. My uncorrected vision is approximately 20/150, and my corrected vision maxes out at 20/40, however I'm really just guessing based on shapes at the 20/40 level, so I'd say the line that I can comfortably see on eye charts with glasses/contacts is about 20/60.
I have significant light sensitivity.
I have minimal nystagmus - it is there, but it mostly shows up when my eyes are strained. About once a day my vision will just start to shake.
Most significantly to me, I have permanent double vision. This is worsened in double vision "attacks", which occur when my eyes get strained -> nystagmus acts up -> double vision gets worse.
I was also born with strabismus, but it was corrected via surgery.
Regarding my skin, I am paler than all of my extended family, however my mom and brother both also have ocular albinism, so I am about the same shade as my immediate family, excluding my dad who does not have ocular albinism. I am just about a shade lighter than you, and I'd say my hair is two shades lighter than yours, while my eyes are the exact same shade.
My son has the same condition as you, can you help me if there is any surgery I can do to his eyes just to increase the quality of life for him?
My son is 4
That's really cool. I knew there were different kinds of albinism but I didn't know the names. There was a girl a year below me in middle school with albinism who had super dark hair, white skin and her irises were blue on the outside but almost white toward the pupils. She was absolutely beautiful.
I'm from Bangladesh. I still don't know what albinism am i or do i have any albinism decease ? I have pretty pale colour skin and my whole body's hair and beard is black and my hair colour is brown.
I have oculocutainious albinism (type 1b) and nystagmus and I still can't pronounce it properly every time, lol. No one notices that I'm an albino unless I actually tell them. Completely agree about the sun, it was slightly sunny in the southern U.K. Today and I went around with shades on all day and it still hurt my eyes. I also used to have light white blonde hair and now my hairs like your. Thanks for trying to raise awareness of it, it is very difficult to explain to people why I don't look like the stereotype of an albino. Great job! 👍😀
Does your eyes look red when light reflects?
Hey, i know its an old video, but i have a question. Do your eyes um, "shake" when sleeping? My friend's baby has some type of nystagmus but it disappears when she's falling asleep (and still has half open eyes) /sleeping. It also stops when she's trying to focus. She's 2 months old. Thanks in advance!
I have a really Dark red hair with blue green eyes some days there super blue others there green and by my pupil is brown my eyes shake and when I was little I would tillt my head to see things and I have vary White skin and I want to know how albino people are made what u have to have to be albino and how to explain it to other people??
Is there a difference between just being pale and being albino? Because I’ve always been told I was pale but it wasn’t until recently that someone said I might have a form of albinism... so now I’m curious.
I can’t tan, I burn super easily, what little color I have is either from years of burning myself or freckles, I’m naturally strawberry blonde, my blue eyes change the hue of blue often etc.
How does one know?
I have full albinism so my hair has no color and my skin is really light and my eyes are purple and my pupils are red and my eyes are really sensitive to light and they also move side to side really fast
I have occular albinism as well as nystagmus and myopia but my eyes are hazel brown I have some pigment in my hair and skin I can tan but my eyes I dont see the shaking in my vision. For years many people I came across never understood what occular albinism is and thought my mom was just a nanny while I was growing up lol
I have brown and black hairs. literally they are dual colored. they fade from dark golden brown to back. and they are the thickest hair strands.
I have albinism. I wasn’t diagnosed until I was 14 and going into my 3rd eye surgery. My little sister and mother both have albinism as well and they weren’t diagnosed until after I was.
I also have Ocular Albinism. It never really has bothered me much, I've been wearing glasses for 8 years. My skin is very pale and I have light blonde hair and blue eyes. It affects both my eyes, hair and skin, but mostly my eyes and skin. I don't really mind wearing glasses but it really effects my skin. I recently suffered a 2nd degree sunburn, and I was wearing sunscreen and a long sleeved shirt, so it's hard to not get sunburned. But I appreciate you spreading awareness to this because many people don't know about it. (:
Our grandson has ocularalbinism ...he will be two in July - his parents sought help and he is improving with eye glasses .Did glasses help you ?
Hey James. I have ocular albinism and nystagmus, had it since birth. It's really interesting to see other young people who have OA+N talking about it on youtube, it's kind of difficult to find a lot of information on it.
Very informative! Never met someone with albinism, so it's nice to learn :)
Thanks for watching!
Mine is super mild, and I'm half Native so I have black hair, olive skin, and blue eyes with terrible eyesight. All it affected was my eyes, and without nystagmus.
dude, i have albinism as you can tell, also nystagmus, but i've neverr experienced the shaking thing. i am unable to focus my vision on 1 thing, i can't see in sunlight and i need a binocular to read the whiteboard when i'm at school. so can you explain more about the shaking?
aldo darmara my vision isn't shaky either snd have albinism and nystagmus as well. The experience is different for everyone. There's also such a wide spectrum of impact on visual acuity. All of the elements have a spectrum and we're all different along that so no one experience will be the same in terms of how we see.
CraftyBlindChick oh, okay then, thanks for the info!
James Rath I feel for you too! It sucks to feel like that! I'm glad mine doesn't make me feel that way!
Yeah, I too have hard times to explain to people and to myself how that "nystagmus shaking" really feels. For me, as I have horizontal nystagmus only, it is as follows. If I relax my eyes as much as possible (as if getting sleepy) and look at a bright spot, I see how it is slightly shaking left and right. Also, when I get nervous, I see the same thing. Normally, I don't notice it much in my everyday life because my other issues (nearsightedness and astigmatism) have much greater impact on my vision than nystagmus. I know about the shaking only when I myself pay attention to it or if somebody else notices that my eyes are not perfectly still, although I seem to be looking focused on something.
Can you please tell me the actual name of your hair colour? As an Asian i found most caucasians having this hair colour and i tried to imitate using hair colours as my natural hair is jet black I don't know how to tell the hair colourists the name ? I use to say light green brown....or dark blonde.
my daughter has albinism, she is Chinese and her hair is a honey color blonde and her eyea change color with her moods. I really enjoyed your video thank you
This is so relatable I have Ocular Albinism and Nystagmus as well and when ever I tell people that they always say but you don’t look albino. My hair also has gotten darker as I’ve gotten older and I think I might actually hate the sun.
I have OCA also!! same exact type as you with nystagmas! i couldnt even imagine the earthquake thing! thank you for making this video! love you!
Thanks for watching!!
The sun doesn't like me either! I would like to be able to be out in the sun at the beach but I'll burn even with sunscreen on I'm the one in the shade with sun hat and long sleeve rash guard on!!
yup! a person from my schools had a child that was albino. she just looked mixed no physical appearance of being albino but both of her parents are black and they were both dark brown. they didn’t think anything of it at first bc one of then has a light skin mom but when her hair got lighter they both were a little confused thought she may have been switched or something so they got a dna test found out it was their child then when she started having health issues they found out she was albino. i then looked it up and realized there is no look to it and i have to explain that to ppl that think its an insult to be called albino.
Black people carry both genes normal and albino one so when they mate with someone with similar organisms they produce albinos that we see with light skin complexion.
Wow this was really interesting!!
I've tried to change this youtube profile of me to a picture but for some reason won't let me
I have ocular albinism also. I loved your comment about the sun. It has not been very nice to us lol 😂
what is the link to the film? Out it in your description box please
I have oculocutaneous albinism and nystagmus but I don’t notice anything shaking I just see straight but my eyes are always shaking
I think I might have some kind of Albinism, when I was little I was pale, super pale with real blue eyes, and basically white hair. However now my hair has darkened quite a lot, and my eyes are more green than blue, I don't have the eye shaking, but my eyes are pretty sensitive to sunlight. I never knew that some people have Albinism, but can kind of grow out of it, I think I am one of those people the more I hear about it.
I have mild albinism and I have the same situation. Oh and I had freckles when I was younger but they all faded by the time I was 16. My mom was worried so she recorded everything for me and she helped me get medical treatment for some of my disabilities from the condition. I have all of the processing disabilities that come with the condition and I was born with pink and white hair and I was bald until I was three. I have dark reddish brown eyes and sometimes I have pink specks and I do have moles on my eyeballs that look like bruises. The pink specks are more visible in certain conditions. I have no skin color though but dark hair on my arms and legs. I was surprised when I was diagnosed because I don't think I look albino. I do look different from my family members too. I never could tan or handle the heat and I get hives from lightbulbs so I use a special lightbulb in my apartment. I have dark red brown and white with a dishwasher hair color. I am very allergic to light and I get tested for skin cancer three times a year. It can be a disability because of the processing disorders and vision problems. I have flat eyeballs too and I see the world as if I am looking through a stretched out bubble that is distorted a bit. I do have dizziness and issues processing light mostly in my left eye. Oh and I was diagnosed with autism in my 30's. I do have family in Brazil who have albinism too. I tried to tell my father after I got diagnosed but he never cared for me and he always has issues believing me. He used to blame my mother for every health problem I have. I've learned to stay away from him. I am going to counseling for PSTD and I am having to deal with my past abuse. Albinism is a complicated condition and it is very diverse. A lot of red heads might be albino and not know. People need to get skin biopsy to fully get diagnosed. I was diagnosed after getting skin biopsy for testing for nerve damage for pain management. They were surprised too and excited to work with me. I have four rare conditions two are neurological and the others are genetic mutations. I am 1 out of 6 people in the world that have been documented to be diagnosed with a known neurological condition that has no name, only 7 people in the world have been diagnosed.