IAMA 19 year old girl who has Ocular albinism, type 1 (OA1) and my older sister has full albinism. AMA

Just wanted to tell you that I think you're both very beautiful =)

aww thank you very much!

You two are both so pretty! So many girls pay to have hair like you both :)

Thank you! I think my sister is very beautiful but she just doesn't believe me. I would love to have her hair color! My hair used to be lighter when I was younger but it got darker as I grew up.

What's the most striking way in which people treat you guys differently, consciously or not?

Well for me, people generally comment on my eyes shaking and sometimes people think I am doing it on purpose and get mad at me for being a "distraction". For my sister, people are constantly staring at her in stores and even bring alot of attention to her by asking for a picture with her or screaming they find a "real albino".

I would also like to note, she has white hair and sticks out in ANY crowd so almost every time she is out of the house, people are saying or doing something to bring attention to her condition.

I had a friend who was a real albino..We were in college together..People would look at her very quickly at a distance and then look away as she got closer...No "Real albino!" stuff. How do you and she deal with this crap and are you both legally blind?

My sister is legally blind and I have 20/60 vision with my glasses and mine cannot be corrected past that. And how me and my sister deal with the crap is way different. She laughs it off but secretly it hurts her. I just tell the person the facts and if they are rude, I tell them they are rude. I am not opposed to enlightening people who really are seeking info but the stupid people usually get told off by me.

"Hey Jed, ah found eh real albino!"

"Well shucks, Randy! Yeh getta git a pitcher!"

ROFL!!!!! That has happened on more than one occasion. Without doubt, people always start with "OMG a real abino!!!!" or "Look it's a real albino!" or "Hey Jed, ah found eh real albino!"

Having the same condition I can confirm the eyes shaking being a big deal to everyone. Having to explain wht and why is always a 3 minute ordeal. Some find it cool most find it weird.

lol little kids really get a kick out of it and try to make their eyes shake too. Oddly, the people I get the most crap from is my teachers.

She should move to Sweden, Iceland, Norway or Denmark. People this blond are not that uncommon there. At least I wouldn't look at her twice if I saw her in a store.

People from those places ask her all the time if she is from Sweden. We are actually Dutch, German, and a little Irish. I visit my family sometimes and they all have blonde or red hair. Some are more blonde than others but my sister is defiantly the most blonde.

Do you ever get paid for scientific research?

Not yet =P But I do have to go to a special eye doctor and he uses me as a lab rat all the time. He has his collegues come in and examine me such as neurologists and he also has his students come and try to diagnose my condition as training for when they become eye doctors.

You should charge for this! Sixty bucks per intern per half hour sounds about right!

HAHA I should! Actually, I made him give me cookies each time =P

sounds like he's scamming you for free cookies..

No lol I enjoy doing it! All I have to do is sit there and answer questions and have them shine a SUPER bright light in my eyes for a very long time. It is well worth the cookies imo =)

Yea cookies are pretty awesome, Whats the worst sun burn you have ever had?

That would have to be when I was 12 and I went to the beach and didn't reapply my sunscreen. Every inch of my body that wasn't covered by my swimsuit was burnt. It hurt so bad! And then it all started to peel and it just was not a fun experience.

I don't have any medical problems or anything, but burn very easily; one of the more disgusting parts of a serious sunburn is waking up in the morning with your back stuck to the sheets because of the blisters/peeling skin :/

I have learned how to protect myself from the sun better so I don't get sunburns anymore but I used to all the time and the mornings were the worst! Showers were a close second.

Ah cookies are cheap...Your are being short changed big time!

lol I should demand cake! But we all know the cake is a lie ;)

You're both so pretty! I hope this isn't insensitive, but I adore your sister's hair color. I understand that it must be hard to deal with if you didn't choose to have it, since it does tend to draw attention, but I think it's extremely beautiful and elegant. :D

Happy new year to both of you!

Thank you! Happy new year to you too!

Does harsh sunlight affect your eyes?

Yes it does and it hurts REALLY bad!

I have ocular albinism too. Legally blind because of it though. The only thing I really dislike about it is the fact of not being able to drive. It would be so much easier if I could. I can get buy on any other issue except that one. Does your sister have a similar feeling?

She feels exactly that way! I know it is hard on her to have to depend on other people to drive her around.

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I think racism is very wrong and I assume there are albino racists because there are racist people everywhere.

Can we get a pic of your sister's eyes?

I posted a pic of us but here is one of just her. http://i.imgur.com/GXMh0.jpg?1 you can see her eyes are violet which means she does have some pigment, just not alot

Thanks! I wonder, do you ever get approached by photographers or fashion designers to model? They are often looking for exotic and interesting looking people.

Well I do not look that different. My eyes are more blue than others and I definitely have the blond hair but I don't look different enough for people to really want me in photographs. My sister however, has been approached by photographers before but she has never really made a career out of it.

Interesting. :) One can make a very comfortable living even as a part time model.

She just doesn't like being different and as a result, she doesn't like to put herself out there like that. She is so stubborn...

She's so cute!

I know right? haha I always was jealous I didn't get the white hair too although I got the pale skin.

shes gorgeous

I will let her know! She is so mad at me because I shared her picture! But I don't care mwahahaha

Happy New Year! My eye doctor told my parents that I probably had Ocular Albinism when I was really young (2 years old I think) but I never got tested or anything to really prove it but I think that my nystagmus makes it pretty obvious (and of course really blond hair + blue eyes). I don't have strabismus but I have astigmatism and my vision is rated (here in France) 4 out of 10 and I would possibly be able to drive a car in France. My hair also got darker (I'll try to find some pictures) from almost white to something close to yours. Wow I really never talked about it before, even if I had remarks about my nystagmus, that's a funny feeling. About the picture, you two look really really great, besides here eye color that is a little bit unusual your sister looks very ravishing and you look in my opinion stuning.

Anyways, if you both ever happpen to be in France or in Poland you should definitly tell me =)

Actually, we are going to France this summer =) It really makes me feel good that so many people think I am pretty! I always knew my sister was beautiful but I never really saw myself that way. And I think that it is very cool that were able to talk about your condition for the first time! It feels good to know that there are other people out there that understand exactly what I am experiencing.

Definitively contact me before this summer so I can show you the "real" Paris or at least write you a tour-guide or something. Here are two picture of me at one and two years old: http://imgur.com/a/1QVlP I had a pretty bad ass eye doctor that made me wear glasses when I was one and a half years old and I'd say that thanks to her I had a pretty normal childhood (I can't imagine how I would have developped without proper correction). My father used to tell me that my head could be moving a litlle bit (kind of "vibrating" in a way) to maybe compensate the nystagmus, can you think of something similar?

I always tilted my head to compensate for the out of focusness due to my eyes never staying on one thing. And I wore glasses from the time I was about a year old. Here is a picture from when I was about to turn two. http://i.imgur.com/bL3hu.jpg?1

I might as well post some pictures of me and my sister when we were younger =) http://imgur.com/a/gHCPJ there you go

Your sister look amazing in the third picture. As someone said before, they are some people that would pay a lot to have hair like that.

She actually donated her hair for locks of love which is an organisation that makes wigs for kids with cancer. So some lucky child gets the privilege of having her hair color =)

What type of accommodations were you given at school (if any) and how did these help/hurt?

I got large print tests and any other handouts and at college, I am allowed to use a CCTV which is basically a projector that changes the colors of the page to more high contrast colors like yellow and black. They have helped so much! When it comes to math classes, the large print helped me not make stupid mistakes like think a 0 was an 8 or a comma was a period.

Can we get a picture of you and your sister?

yes here ya'll go! http://i.imgur.com/iks6R.jpg?1

Can you tell us more about your sister being legally blind? What can she see? Does she get any government assistance?

Well her vision is 20/550 which means that something that is 20 feet away actually looks to her like 550 feet away. She does not receive any government assistance at the moment. And unless something is very close, it looks super blurry to her. It is hard to see someones face to the point where she can recognize someone until they are about two feet away. She can't drive because legally, she is not allowed to. She has people in her life (friends, family etc.) who help her out alot like read menus for her and take notes for her in class. Life is very hard for her but she has find little ways to overcome.

do albinos use spray tan to blend in with the population?

Some dye their hair and use spray tan to look "normal" but most just stay the way they are. My sister however has used spay tan once and she looked really funny and never did it again.

With little to no melanin to latch onto all the sprays and dyes don't last long when they do work, or they go odd colours. My sister and myself both have albinism and she tried dye when she was younger. I'm horrible but I almost died laughing when she tried to use brown dye and her hair went almost neon orange.

HAHA that reminds me of when her hair turned bright green after swimming =D I was laughing so hard!!

I'm easily entertained :) Hell, I still giggle when I stand under black light. Clubs were fun. (for the curious the lack of pigment means my hair reflects light to a small degree, so it glows a little under black light, or used to when it was longer anyway).

My hair actually glows under a black light too for some reason. Maybe it is the lack of pigment but it is really funny. Honestly, I wouldn't trade my condition because it has made me...me lol My sister does not have enough fun with it which I think is sad.

Was your sister always legally blind or did her vision just degrade as her body developed more and more?

She was born legally blind. Her vision actually has not gotten better or worse as of right now. The condition does deteriorate the eyes over time so her vision will get worse later in life.

You two are so cute!! Seriously!

It's hard being different (I know it!)

Do you think it helped that you could share your condition growing up?

I don't know how I would have got through it if I hadn't had my sister and I don't think she could have gotten through without me. It is very hard being different and I am lucky to have been able to grow up with someone who understood my struggles completely. This might be a good time to say I have one more older sister who does not have the condition and neither of my parents do (although they both carried the recessive gene for it but didn't know it.) My sister was the only person who understood and as a result of that, I think it helped astronomically to share my condition with her even though mine is not as extensive as hers.

How strange that your sister was not affected!

I was a sick kid with 2 ridiculously healthy siblings, although they love me and they cared they never will understand fully how hard and isolating it is to be sick! You're very lucky to have each other!

Well the gene is recessive and the only way to get the condition is if both parents pass that recessive gene which leaves about a 1 in 4 chance the kid will have it. My parent's first child did not have it and it wasn't until they had the second child ( the one with full albinism) that they found out they both had the gene. And of course when I was born, they were prepared for it if I was also albino.

i have ONH and find that going out in daylight is very dangourous/painfull do you or your siter ever get accused of being a vampire or demon i wish i had a dollar for everytime i hear it wow i cant seem to type today either lol "sister"

It depends on how sunny it is outside. It is very painful for my sister though. Even flash photography almost leaves her crying. She has been called a demon or vampire quite often because of her eye color. I usually wear sunglasses so people don't really notice how painful it is.

yeah i know i am mostly nocternal myself i have VERY expensive sunglasses and dont like having my photo taken tell your sister that she is not alone and that there are more people that find albinos and such very beautiful

I think they are the most beautiful :)

Has your sister considered dying her hair/eyebrows and using mascara to detract from her being Albino and all?

She tried it once but it just didn't look right so she never did it again. Since her hair is so light, the color really comes out looking unnatural because there is nothing for it to blend with.

Did she go to a professional or DIY kind of thing? A Pro would be able to give a consult and such.

HAHA she did it herself! She chose to dye her hair red which was a TERRIBLE idea and wouldn't let me take pictures because she was so embarrassed. I think she is too cheap to go to a professional anyway =P

Ahaha, that would be her problem, never do it yourself! Especially when you have more complicated hair. Hmm if she REALLY wanted to, she could go to a university and get it done for cheap/free.

She is in engineering school so I am pretty sure getting her hair dyed is not a priority but I will suggest going to a professional sometime =)

She has really nice long hair though, she should really consider styling it more!

I agree! But her hair is so straight and curling it doesn't work.

braid it? I think she'd look really cute with it up.

Oh that is a good idea!

She is in engineering school

http://i.imgur.com/sw9zX.gif

Well I am not haha

I know I'm a bit late, but I only just saw this.

I have Ocular Albinism too, but no history of full albinism in the family. I believe my sight is rated at 3/12.

Is there anything in particular that helps? I saw you mentioning large print texts (I had those too, and extra time), and the CCTV thing, which I had for a trail but never really found that useful. I also use a monocular which was incredibly useful for seeing the board in school and uni. Is there anything else that you could recommend I look into that could help?

You mention you wear glasses, how do they help? When I was young the hospital kept trying to give me glasses but they never helped in the slightest, so I stopped wearing them and they eventually stopped trying.

How do you describe how your sight is to others? Since I (and I assume you too) was born with this, it's very hard to say how it's different. I usually say: "It's not focus related, everything seems clear and sharp, just small. Like looking through binoculars backwards but without tunnel vision. Imagine having perfect sight, and looking at a sign. Can you read what it says? <person says yes>. Move it twice as far away, what about now? Keep going until you can't see it any more. Why not? It's just too small to make out."

Is there anything that this condition stops you doing? So far the only two things that I've found I can't do are: Drive a car / fly a plane / other vehicle stuff, and learn to solo skydive. Both due to obvious legal reasons.

I got disabled students allowance, whist at university, which consisted of a laptop, printer and monitor arm. The most useful of those is the monitor arm, which is great for moving the screen nearer to me. Now I get free travel on local buses in the entirety of the UK, and free travel on all public transport in London.

If you want to chat more (outside of any replies), feel free to PM me.

Good luck with everything, it's nice to know there's someone else out there coping with this condition.

Woah lots of questions lol! Okay well for school, I had a friend take notes for me in class because I couldn't see the board very well. I think I mentioned everything else that helps with school. I also use high contrast paper for tests. My glasses are specifically for my strabisimus caused by the albinism. Basically, my eye turns in and the glasses trick my eyes into being straight. I basically describe my vision to people as seeing things but my eyes just not being able to focus on a specific letter. Also I explain my eyes will never be 20/20 so what they see at 20 feet looks like it is 40 feet away from me. I am lucky and can drive (barely passed the vision portion). I can't join the military though. The U.S government doesn't really help me out much =/

Johnny & Edger Winter were albino. Great blues men. When on stage quite often they would play with their eyes closed, any idea why? You two are beautiful, keep the smiles coming.

I would imagine because they were so into the music they shut thier eyes. I do that alot when I am playing music =)

hotties :) sorry to hear about your health problems though, anyways, I hope you both have a great new years

I hope you have a great new years too =)

I take it the lighter shade of blue in your eyes is the result of it. It's a shame that it comes with such a condition because some of us would love to stand out naturally, of course not at this price.

As for a question, are you harassed because of your eyes or bothered at all by other people? I find it hard to imagine anyone would actually be negative over something like this but then again not the entire world is as chivalrous.

I get heavily ridiculed because my eyes shake. I had two surgeries to fix the crossed eyes but it never fixed the shaking. When I am nervous it gets worse so naturally, when people bring attention to it, my eyes shake worse and then more people start commenting on it and it is pretty embarrassing. Also, people don't realize how bad my vision is and they make fun of me when I cannot see something.

"... and they make fun of me when I cannot see something." And this is why I generally hate people. Really? I'm sorry people are such turds. Keep on keepin' on, girls!

I stand up for myself when the rude people start being mean. It does hurt but I try not to take it to heart. My poor sister just holds it all inside and never shows she is upset or hurt but when she gets home she cries alot. There has been many times where I wanted to punch someone in the store for embarrassing my sister.

What have your romantic relationships been like? Issues? Difficulties?

Well I was in a relationship when I was sixteen and at that time, I had not had my surgeries to fix my crossed eyes. After a few months, he saw me for the first time without my glasses on ( my glasses had prisms to trick my eyes into being straight). He got really freaked out and thought I was creepy and that relationship didn't even last another month =/ My sister has never had a boyfriend.

Wow..i find that really odd. Truth be told, that sort of thing is a non issue with guys, and as you've no doubt noticed here, plenty of guys find you both quite attractive.

Well when they are straight =P My eyes looked creepy all turned in haha and he was young and immature and didn't want to marry a freak. I know I am not a freak and after this whole reddit experience, I think I am ready to put myself out there again! So thank you guys of Reddit for helping me get my confidence back =)

Your eyes actually have a very beautiful color to them.

aww thank you! I wouldn't change my eye color for anything, it is the only thing good that came out of my condition =)

What about a klondike bar?

WOAH! Now that is a tough one....I would have to say no...not even for a Klondike bar. But it is a tough decision.

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Interesting fact, our eyes actually change colors when we are in different moods. When she is mad, her eyes turn red and it is terrifying! When I get sad or sick, my eyes turn grey. And I am glad you weren't creeped out =P

Do you guys wear different type of clothes because of your albinism? Do you ever have to stay home because of the weather? What do you do about sun lotion and etc??

Well my sister tries not to wear white because it washes her out. We are fine in any weather except when it is super sunny because it makes our eyes hurt alot but sunglasses help. For sun lotion, we both use spf 50-100 and have to reapply every two hours and right after we swim or get in any type of water. Over the years our skin has stopped burning as easy and I am not sure why. Possibly because we take more care to prevent a burn. We are 70% more likely to develop skin cancer so it is important for us to protect our skin.

Where are you guys from?

How good/bad is your vision?

Favourite movie?

Play any video games?

Your sister's and your eyes are beautiful :)

*We are from Texas *My vision is 20/60 and my sister's is 20/550 *My favorite movie is Tangled =P *I play Zelda, Black Ops 2, and assassin's creed...and all Mario games =) *and thank you =)

Ever thought of travelling? If so where would you like to go?

What career would you like to go into?

I would love to travel! Europe first and then maybe China and then South America! I love Europe so much and I just cannot wait to visit! Well I originally was going to be an engineer but decided I wanted to be a teacher instead. After I get my masters in education, I want to go back to school and get my EMT license.

How did you find reddit?

Are there any other albinos living in your area?

What's the most badass thing you've done?

*My friend told me about it and I had to come check it out. * Actually, i haven't met any in my area but I have met a few when I would go on family vacations. * I swam with alligators once and I swam with stingrays once. I also stole a stalactite from a national park but sssshhh... don't tell anyone =P

Excuse my ignorance, but does OA1 mean you are light sensitive also? Sorry if someone already asked.

Oh yes! I am very light sensitive. I just have more pigment then people with OA2 or OA3.

In the last picture is your sister even wearing tights? :P

Yes lol although I have to admit, I had to look closely =P

Other than your eyes thing, does Albanism affect you in any ways other than looks? I've always been curious.

Well it makes you get a sunburn alot easier but that is about all. Albinism is simply a lack of pigment. So in the skin, the pigment protect from the sun and in the eyes the pigment promotes development. Those are really the only two areas it effects.

Fellow "Ocular albino" here <- Is that what we call ourselves? I've never met a person with the same condition.

At what age were you identified with ocular albinism? because I have had a weird history with my eyes as well.

When I was born the doctor identified the ocular nerve in my left eye was off 'center', so when I focus on an object my eyes don't equally angle in, but it's skewed to the right. Later I was identified as being color blind (red deficient). So moving on, during my childhood I played baseball and failed, and my parents never could figure why I couldn't hit the ball. In school I had trouble seeing the board, and when the teacher used a red marker I could never see it. Jump to when I was 18, I finally got to a good doctor and he gave me glasses and I was amazed as I could finally see so much more and finally understand things people were talking about. Jump to two year ago, when I was 21 I saw a new eye doctor and he told me I had ocular albinism. He told me all the symptoms and it made so much sense. It was funny the way he told me too, because he sat down in front of me, said "I have some .... news... about your eyes" - he said it rather sadly. Then he told me I had ocular albinism, and I started laughing. I've been pale my whole life so the term albino doesn't effect me much, and my eyes have always been bad, so I have no problem with the condition, I'm just glad I finally know about it.

/story

Well since my sister was born with very visible albinism, the doctors already knew what my eye condition was. It was prevalent when I was about 6 months old when my eyes started to cross. My eyes were at about 20/30 but the older I got, the worse my vision became because my eyes crossed more and more. I did have the nystagmus but the crossing kind of out shadowed it. My glasses with prisms fixed the crossing to a certain degree until I was about 14 when the glasses stopped helping and at 16 I had eye muscle surgery to fix it. That was when I realized i had no depth perception whatsoever and I never had it in the first place because my eyes never worked together. After the surgery, I had to readjust to the world and actually have eye therapy because I wasn't used to everything not being flat. I had a second surgery a year later and now my eyes barely cross but I still have the nystagmus and I lost a little depth perception but I do have some. Now, I am sitting at about 20/60 vision.

Oh one way they can tell it is albinism and not something else is when they shine a light in your eye and it reflects back a pink or red color.

Wow that was a fast reply.

My sister and I look very different. We're 1/2 Italian, 1/4 Polish, 1/4 Irish. She looks completely Italian and I look completely Polish. I don't even know if a doctor would recognize us as siblings.

And wow that drastic change to having depth perception must have been crazy. I remember my drastic change in vision, but with mine it just made things clearer. It must have been fun to see the world in a whole new way.

lol I ran into alot of doors and I cried when I saw the 3D movie "How to train your dragon" because I had never seen something pop like that. I am 1/2 German and 1/4 Dutch and 1/4 Irish btw.

The first movie I saw with correct vision was Watchmen and was amazed and finally realized what people were talking about when they talked about amazing special effects of a movie. How to train your Dragon must have been great, it's a good movie, must have been good in 3D. I have yet to see a good movie in 3D.

I also remember when I got my vision corrected I started having fun watching Jeopardy because I could finally read the questions. Before I thought everyone was just a better reader than I was or was really smart and could answer the question faster than Trebek could ask them, then I found out that you could actually read the questions on the screen.

That must of been a very awesome experience! It is amazing what glasses can do.

Definitely. Just compare the grades and general attitude I had about school in high school (no glasses), to my grades and attitude in college (glasses), and it's almost a 180.

That is great! I am very happy for you!

Thanks - I hope the best for you as well.

Random follow up question - have you ever met a fellow ocular albino?

Never in my life. Well I have seen other albinos...just not ocular albinos.

So your eyes shake more when you are trying to focus, or is it just a random thing? Is there anything you can do to prevent it/ make it stop?

My eyes shake more when I am tired or trying to focus and random other times. They always shake, just sometimes they shake more. And there is nothing I can do about it. Actually, I don't notice them shaking, you would think that since my eyes shake, everything I see would shake but that isn't the case. Everything looks normal to me.

I have albinism and nystagmus too, and I'm legally blind as well! It's so cool to see another person on here with the same condition. My vision is so bad that I got a guide dog last summer and it's been a huge help. Have you or your sister ever considered getting one?

I get the same kind of rude comments you described, though my eyes are very pale blue instead. When I tell people I'm albino they don't believe me because of this, I then have to explain that there are multiple types of albinism in varying severity. Do your parents have the condition? Mine do not, and neither does my sister, but I'm guessing she's a carrier for the gene.

Have you or your sister ever felt like it's difficult to fully participate in socializing/making friends due to your vision?

My sister refuses to get a guide dog and I don't have bad enough vision for one. My mom actually does have the condition but she didn't know it until my sister was born. I never really had trouble making friends because of it. I think once people get to know your personality, physical things don't matter as much.

Well if she ever considers it, I think it could help her, but that's just based on my experience. It makes me feel ten times more independent, and instead of people asking me why I'm so pale, am I albino, what's wrong with my eyes, etc., they ask me about my sweet, fluffy dog instead :D How frustrating for your mom. I'm sure it was a relief to finally understand what was going on with her eyes.

I guess what I mean by social issues is vision literally making it harder to participate. For example, I can't find people in crowds, and I've heard people say before "I don't think platinum-luna likes me, I waved at her and she didn't wave back." Um, it's because I can't see the people waving, but sometimes people don't realize that. Or if I don't recognize someone's voice and they say "hi platinum-luna" I'm like "...hi!" while wondering who it was. And flirting is hard, because I can't make eye contact or even tell if a guy is checking me out. Here's an example. Friend: that guy was looking at you. Me: what guy? what did he look like? Do you or your sister ever experience this?

I think it's awesome that your sister is going to engineering school. I'm trying to go to law school, and not many blind people make it into higher education for a combination of reasons.

Oh we both have the problem of not seeing someone until they are super close. If I could get a guide dog, I would! I think it would help me alot but unfortunately, I am not legally blind. My sister doesn't want to come off as a weak person so refuses to use anything offered to her such as a cane or a dog.

are you friends with jim gaffigan?

you're both very pretty btw

I don't know who that is

oh, he's a comedian who we joke about because he's really pale. Was just a joke.

Jim

Ooooh okay =) it is funny!

Do you live in Africa?

Nope. I live in the USA.

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I will tell her you think so =)

Have you or your sister ever considered doing a porn? Albino porn is the internet holy grail, and I've never been able to find any.

Nope