Why I Don't Look ALBINO but Do Have ALBINISM! 

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.

You almost convinced me in the beginning 😂😂

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

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! :)

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.

My grandson has OA with nystagmus. I’m on a learning mission to help him.

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

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

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.

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!

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

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.

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 :))

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 great for my little brother with ocular albinism, he has the exact thing as you where his eyes shake

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

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.

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 :)

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 😂

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!

"yeah, everything's been shaking .....for the past 21 years" LOL i love you.

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.

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!!

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

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💕

Love listening to you talk to us. New to the research and glad I found you. Thanks for sharing.

Just discovered that not only do I have albinism, but I am a carrier for ALL of them. I literally can't tan, although I do freckle very heavily, so it's conflicting. It does make me feel better for a younger me who was constantly made fun of for how bright white I was (am) and how the only thing the sun does is burn me.

Really nice vid,James! U content makes huge difference on RU-vid,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.

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 RU-vid 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.)

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.

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

"Is that Ralph from Wreak it Ralph?" My son asked me this while watching your video. ✌🏻

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.

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 :)

I have ocular albinism and brown hair and eyes.

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! 👍😀

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.

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 :)

One thing a lot of people don't understand is that even people with the typical, more well-known form of albinism still don't have literally white skin. They usually have pinkish skin, due to blood showing through. I also have to add that their eyes only look red when light hits them a certain way and shows the blood vessels. Otherwise, they can have any eye color.

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.

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.

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.

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!

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. :)

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

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

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 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.

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.

I have actually met one person with albinism who had white hair and pink/red eyes, but only one. It's not as common as people think!

My daughter is 2 months old. Both me and her father are Latino brown hair brown eyes. She came out with a pretty strawberry blonde hair and blue eyes and light skin. I wouldn’t have guessed she had Albinism. I noticed nystagmus in her eyes and took her in and her doctor is leaning towards Albinism we need to complete some genetic testing. Thank you so much for this video!

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 don't know if I've met anyone with albinism! At the very least nobody has ever told me if they have it. I assumed like a lot of people who don't know much about it that the stereotypical image of someone with practically zero pigment was the only kind of albinism. So I've probably passed by people with albinism without realizing. I guess that's the image that gets more attention in the media because it is the most visually obvious and "interesting". Well it's always fun realizing I've been looking at the world one way, then discovering something else is the case. Still- I don't understand people that just say "Oh you can't be x because of x" instead of finding out more about it.

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

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 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

My nephew has ocular albinism, same with 2 of my brothers. In my family they were treated like any other kid. They were legally blind but had just as much freedom to go out and explore as the others. It bothered me when outsiders would treat them like they were incapable of doing anything because of it. All 3 have grown up to be quite successful in life.

I have ocular albinism along with nystagmus. It's funny and weird because some people some how know that I'm albino without me telling them and then they'll ask me and then there are some people who assume I'm white (I'm not. and, of course, I don't get offended about it, cuz I clearly look white) and I just wonder how some people can tell because I'm not the stereotypic albino who has white hair and red eyes.

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?

I have Albinism!! i found out a couple weeks ago! I get pure white skin and that is my natural state. I do have some melanin because I can tan superrrr dark on vacation but it's gone in a week, literally! I look like Marilyn Manson white. I had black hair once and I look like a geisha especially in the winter. I always joked my whole life saying I look albino and here we are....... almost 30 years later finding I have Albinism when I got genetic testing for my Ehlers-Danlos Syndrome.

I was diagnosed with Ocular Albinism in my 20's. I have very fair skin and light blonde hair......so much so that I look like I have not eye brows or lashes. My eyes are blue. I find my eyes have the stigmus only at night. I'm an artist and my eyes get tired quite quickly. At night time they quickly go back and forth, and often go blurry. I also see things off kilter. I'm costantly straightening out pictures on the wall that I look tilted, only to be told by my husband that it was straight afterall. And I have to wear dark glasses even on rainy days for it's like having needles poking in my eyes. I was told by my eye specialist that having Ocular Albinism is being an in the spectrum of being an Albino....and all it's complications. When I told my Mother my diagnosis back in 1994 her response to me was shocking, for she had me tested when I was a child and was told I was an albino then but didn't want me or anyone else to know about it because she was concerned I would be labeled as an outcast and picked on. So when I tell people that I am an albino....Ocular Albinism.... many people, even family members, tell me that I am not an albino because my eyes are not pink and my hair is not white. It's amazing how many people think they know what it is supposed to be without checking out the facts. I even had one doctor question me until I told him the name of the eye specialist to gave me my diagnosis. Thanks for doing this video.

Had to like within the first minute 😂....... You're very likeable

I have albinisom and I have really bright hair but I put some brown in it now ❤ I loved this video ❤

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

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!

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.

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.

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.

My 11-year-old son has albinism of the Ocular variety. He is fair and blonde which confuses people because I am dark but that's our Irish coming out too as he looks just like my mom did when she was younger. He'd like you to know that the video was really informative for him - we live in South Africa and sometimes people aren't kind - he loves knowing there are more people in the world with a condition that is so interchangeable between everyone. He would also like you to know that his eyes also change colour and look quite different depending on circumstances and weather and... stuff... he's abandoned me to go and play with the dog now!

I have ocular albinism, eye doc used an archaic term called "chimeric albinism" which threw me off when learning. Mine manifests as extreme photosensitivity, astigmatism, and blurry vision at far ranges. When they took a picture of my retina I reeled like one of the monster movies having a flash of light in it's face. Startled the heck out of the attendant. I have sun sensitivity too and joke around at work saying how I'm just 'part ghoul'. I have a morbid sense of humor. I have to wear sunglasses indoors and honestly only see white outside without strong sunglasses.

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!

Thanks for your visibility, I’ve never seen another person with albinism that looked like me. The general public only expect people with albinism to look a certain way and don’t believe you when you don’t look like the portraits in media.

Going today to look into my infant son possibly having albinism. I’m Black and Caucasian and naturally red headed, his father is Mexican and Caucasian, naturally a brunette. Our first son looks like us, darker skin and brunette hair, but our infant has very very pale skin, light blonde hair and blue eyes( I have brown and my husband has green eyes btw). Since I gave birth to him I’ve questioned whether or not he had albinism but everyone kept saying his hair will change and eyes will change but it hasn’t at all. His eyes keep getting lighter. Also, we went to the beach 2 days ago, no one else got sunburned, but him. He currently has blisters on his nose and cheeks despite being shaded the entire time under an umbrella and in the baby wrap. The sun wasn’t even out because we had overcast weather. I’ve also noticed that his eyes are very sensitive to the sun and other bright lights but his reactions are very dramatic to the point that I’m obviously concerned about it. Maybe I’m wrong, but I’ve been pretty spot with the whole mother’s intuition thing.

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. (:

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.

Hi! I have ocular albinism too. I´ve never seen another person with my condition before. When i say that i have this, people think "What? no way! But your skin isn't palide!" Then i have to explain "only my eyes have this". I have some limitations, but i adapt well. I can drive, for example. I have to get close to read and write, but i have a large vision camp, i cant identify people for far, but i can see all things. I have nystagmus and, of course, the light bothers me a lot. I also had strabismus, but it was corrected by surgery. My situation is stabilized, but I would likevery much to find an efficient treatment to improve more. Here there"s more nothyng. (Sorry, i don't know english very well)

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.

I also have ocular albinism! Greetings from Belgium!

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.

I met a very nice family with two kids with Oculocutaneous Albinism when I was a teenager living in Kenya 20 years ago. A 6-7 year old boy and a baby girl. They both had green eyes. I hope they're ok. It's tough there with all the sun.

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.

OMG that joke though! I have albinism so nystagmus just comes part in partial lol

I also have ocular albinism. I'm one of the more rare females with the disorder. I don't have a lot of noticeable nystagmus, and I was able to have "lazy eye" surgery in my early 20s to correct 99% of it. I also had LASEK corrective surgery to get me to 20/20 and 20/40 vision. I have strawberry blonde hair, pale skin, and a few freckles. Thanks for sharing your video!

We do not have red eyes :D (OCA 2). I've met a OCA 1 and he had very light blue eyes (which is usually the color human full blown albinos have :) ). I found your description of your nystagmus interesting. I'm always asked if I see everything shaking and I don't, even though my nystagmus is pretty strong (shaking horizantally and rotating). My body produces more melanin than an OCA1 but still almost none and people still doubt that I'm an Albino. I started bringing my gen test along to prevent drawn out discussions LOL

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

I am albino too, but I color my hair which is a whitish gray. I have the bad eyesight, the colorless skin, the internal problems that come with albinism, but I have green eyes.

I'm not albino, and I'm not blind. But I do have a loose muscle in my eye so sometimes my eyes will shake like that. But it doesn't effect my sight for more than a couple seconds

I believe my son has some form of Albinism. I noticed that his eyes go side by side when he looks. It was born he was very pale and you could probably see his eyebrows when he was born

I have albinism I'm very young so still dealing with people asking questions I'd hard. It's funny how people point out my nystagmus like I don't know it's happening. And like you where talking about someone's null point when I was very young me null point was me tilting my head to the right and looking left, but that made my right eye lazy and I had to get surgery, now I tilt my head down and look up. I get eye aches a lot but I don't know how to help them. My hair is literally gold and shiny in light, but looks dirty blonde regularly. But I also have many other issues like celiac, asthma, etc. I meet many at NOAH conventions that are my age. It doesn't look like I have albinism, but I do. My vision without glasses is 20/150 and with glasses it's 20/50

I also have albinism! I have a currently unknown form of oculocutaneus albinism and I am so tired of people being like "okay you're pretty pale but your eyes aren't purple/pink so you can't be albino"

I have OCA, but am not often recognized as having Albinism due to my complete blindness, and because I have to wear a special type of contact that just so happen to be blue.

I don't like showing people my baby photos because my was literally the color of a DARK ORANGE PUMPKIN! when I was little, people would always come up to me and my moma and they would ask her if she dyed my hair, and it annoyed her. But now I only have strawberry blonde hair, so I still have red hair but people can mistake me for like, light brown, goldish hair.

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!

You know James rath we are the same. I have ocular albinism, my eyes and my hair are brown. People say that I don't look albino, it's just my skin is similar to Americans, that I look american. Cause I have straight hair and I notice that it gets darker when I reached the age of 16 now im 28. Also some Filipinos look Caucasian so it's like a stereotype for me. Im proud of being who I am cause I was born this way. I'm Asian, Im from the Philippines 😊😊😊 it's good to know that you made this video so that people will be educated about the types of albinism.

My grandfather, 2 of my brothers, and 2 of my great nephews all have ocular albinism, leaving them legally blind as well . As you probably know the females in the family are the carriers and the males have a chance of being legally blind because of it. My son does not have ocular albinism. I have 2 daughters who some day could potentially give birth to sons who do. I am so thankful I discovered you on RU-vid. Thank you for speaking about your story!

I love reading medical texts & dictionaries, and when I read what ocular albinism is, I just about fainted. Strabismus, nystagmus, astigmatism and photophobia -- I've got all four in spades. Nice to know there's a reason for it! (I, too, was a little tow-head and now have darker blonde hair.) Never occured to me till tonight to see if there were any videos about it on YT. Glad I found this one!

Hi James. I have congenital glaucoma and in order for me to truly"see" I have to look down the side of my nose. That's where my window of vision typically is. But in order for people not to freak out I have learned to look straightahead and what I perceive as their face. Because, looking at the ocean where I can see them creep them out. Also, I am experiencing a torn retina currently. I have surgery scheduled for Tuesday, and I'm not really looking forward to it. Mostly because this may not be the actual correcting surgery, she said she might have to do it more than one time. Also that, my vision may not get back to what it was before hand.

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!!

Those of us with OCA don't have red eyes either, man, that's a misconception. People with ocular albinism or OCA typically have light blue, blue/grey or can even have green or a brown color of eye. Basically OCA eye color will be similar to OA eye color. No one has red eyes. They do occasionally appear that way due to reflection of light on the vessels in the back of the eye. I'd be happy to collab with you sometime and fight that misconception. I bet @laurenandsheba and others would also!