I have albinism—AmA

hello mr albino. i draw you. hope you like? http://i.imgur.com/qWkDvlx.jpg

Hate to be the buzz kill but what's with the dick necklace

It's a monocular.

How did you... how is that... someone give this person some gold!!

But, really, it's incredible :) Thank you!

i am glad you like it but please no gold i just like to draw. thank you and you are welcome.

No, no, gold is needed! Where's my credit card?

Are you friends with the other sketch people here? A Wild Sketch Appeared and Shitty Watercolour?

nonono. i just like to draw and i am not friends with them

Well, you do a fantastic job. As soon as I'm done here, I'll take a look at your other posts :)

Dude, you're polite as fuck.

He (she? he?) did something really really nice for me, and it was really well done :)

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That's a monocular.

What color are your nipples? Strange question, I know.

Sort of a... dark pink? It's hard to describe, but there is colour.

I've wanted to know the answer to this for a long time, but the internet has never borne fruit. Until today.

^{Show us.}

I mean, for the right price :)

Would Reddit Gold satisfy the price quota?

I'm more of a dogecoin kinda guy :P

Stop avoiding the question, white boy. We want to pay top dollar for your nipples.

Reddit gold is not top dollar.

Have you ever been told to check your white privilege?

I haven't. What would that entail?

A gift basket full off mayonnaise and a Michael Buble Greater hits Cd.

Wh... why? Is there a reference I'm missing? What would I do with that much mayonnaise??

Make some sandwiches, or you could use it as a somewhat smelly sunblock.

I wonder if you could use mayonnaise as a sunblock... I wonder if you could replace someone's sunblock with mayonnaise... that's a wonderful prank idea!! Though, I think using it for a sandwich is a much better use :)

I see you dont use tumblr. Not missing much, just crazy "activists" trying to get equality by putting others down...

I remember when we tricked one of our friends into thinking Tumblr was a social media site for people in gymnastics :P

I still want a brief background, though!

Head over to /r/TumblrInAction for some examples. Remember, most of these people are, in some way, serious. Not all, but most.

Tumblr is considered to be one of the main sites used by SJWs or Social Justice Warriors. These people attempt to right the wrongs they see in society. A noble cause. Unfortunately, most of the are extremely opinionated, refuse to take criticism, irrational and are, for the most part, insane.

I can't really describe it any more than that, there's so little rationale that it's almost impossible. Have a look through tumblrinaction and I think you'll get the idea.

So it's kinda like Occupy Wall Street, but focused on social justice issues instead of wealth issues?

"Check your white privilege" has become a term to silence white people who may want to express a point of view on race, poverty or gender issues.

The assumption is that your inherent whiteness makes you privileged, and therefore you are unable to understand what it might be like to be a person from a minority race. While there is truth to the advantages white people have in parts of society it's an accusation painted in such broad strokes as to be useless for rational discourse.

It's such a ludicrous thing to say to a person, that you can mostly find it said jokingly or ironically like I meant :)

So... here's the thing: I'm Hispanic, I just happen to have really white skin due to albinism so... do I still have a white privilege? I mean, I'm white, just not ethnically. But I am white!!

What's the weirdest (or dumbest) thing anyone has ever asked you, besides this?

I once had someone ask me if I can see myself in the mirror... this was during the whole Twilight phase—doesn't change the ridiculousness of the question, but still :P

So...could you?

I can, I just don't like to :)

:(

But hey, I'll take selfies for Reddit!^{Becausethemodsrequireitforproof}

You don't? hey man you have an exotic beauty!

Tell that to the women at da club last night!

i think you're subestimate yourself.

edit: Trust me, i know about that.

Probably, but I'm still not getting anywhere. Any advice?

Probably, but I'm still not getting anywhere. Any advice?

Nadie puede dar consejos, no hay hombre que sea tan viejo. In spanish sounds nice.

Lucky for us I'm a fluent Spanish speaker, accent and everything.

I should just use Spanish, it couldn't hurt :P

What (if any) speed bumps do you have to deal with that an average person would not? Also, have you found any ways to mask yourself a little? Such as how a short person can wear vertical stripes to look a little taller.

One of the biggest things about albinism that most people don't know about are the visual limitations. My vision is so terrible that I'll never be able to drive (unless Google hurries up and brings out their fancy car). I have no idea if I'm making eye contact, I can discern body language, and crossing at busy intersections is always a pain. There are lots of things like monoculars and magnifiers and such that help, but there's some things that you just can't remedy.

Oh boy, that's something I hadn't even thought of. Is it due to lack of pigment in the iris?

It's due to a variety of problems with the eye, they all play a role. It's hard to explain it without going into a two hour lecture on eye anatomy but... it's an underdeveloped fovea, so we lack depth perception and a lot of the finer vision. Misrouting of the optic nerves, so we can't see 3D effects. Nystagmus, the wiggling of the eyes, which makes focusing harder in some cases, and on and on. So there are a lot of things wrong and undeveloped in the eye.

Ah cool. That was actually very interesting. Thanks for the ama.

Glad you got something out of it, it's really complicated to explain. I actually write for a magazine and I've been tasked with writing an article on this subject... it makes my head want to explode. There are so many parts of the eye and albinism causes a problem with almost every part. Explaining it is just so difficult without going into a long ass lecture. There is no ELI5 for this :(

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Of course! Or I can just send it to you directly :)

I find the fact you have Nyastagmus very interesting, as my younger brother has it too. However his is standalone and he is not albino. Are you able to focus more easily by moving your head to the left or right ? - assuming you have Nystagmus and weren't just giving some general examples

Nystagmus can be just standalone due to genetics or trauma, and it's generally okay because it doesn't affect vision all that much.

You actually don't want to be turning your head. In nystagmus, we have something called a "null zone" where nystagmus is quietest and vision is the best. In 50% of people, myself included, the null zone is straight ahead and we look straight ahead. In the other half, the null zone is significantly off to one side, and you'll usually see these people tilting their heads in odd angles or directions because their vision is the best that way. That's correctable with surgery.

Thanks my younger brother has congenital Nyastagmus so was present form. However I'd never realised about null zones. He always seems to turn his head to look at things. I became very curious when I found a British Tv host do the same thing. Wasn't aware it was correctable with surgery though.

Head turning can be problematic as time goes on because it eventually strains the neck and the upper back. Each ophthalmologist has to determine for themselves if a head turn is deemed significant, but it if it it's pretty easy to correct it with a simple surgery :)

Wow. So everyone with albinism has some visual limitations? I didn't know that!

Yes. There are some people with albinism who have 20/20 vision, but the vast majority have some degree of visual impairment and photosensitivity.

Have you considered getting tattoos?

I keep thinking about it, and everyone assures me that the colours would pop. I just can't pick the right design!

Don't get one unless your sure. Absolute sure. There's a top I heard about have a picture of what you want. Look at it everyday from anywhere from 6 months to a year. You might change your mind. I'm currently doing this with one I want.

That's why I've held off for so long. And then I considered really stupid stuff like the Apple logo or Reddit snoo for shits and giggles, but I'm sure I'd regret it when I was in my 40's :P

When it boils down to it, it'll probably be like wife/kid's name or something special like that.

Nonsense. You'll love your ink as much as you love yourself, unless you go full retard.

It's just hard to pick something knowing it's going to be permanent and hoping I won't regret it in 40 years. But I know I'd love whatever I ultimately chose, unless I drunkenly stepped into a bar and picked something stupid—but I think you covered that.

I've heard allot of people regretting getting there wife's name. Kids fine. Wife s name would advise against it.

I wonder how many people have tattooed their partner's name on them just to have the relationship/marriage fail.

Hello, Alex! What color are your eyes?

My medical record says "hazel" but as you'll see, they're a mix of colours:

https://www.flickr.com/photos/applealexc/8664834598/

Hey, your eyes are quite similar to mine. In coloration and in function; my vision is pretty shitty too. -6 in each eye or something like that.

We match, hooray! :P

Emmmm delicious heterochromatic eyes

I thought that term was reserved for people with each eye being a different colour! I'm totally using that everywhere now :)

This form is called central heterochromia. I have it myself as well. It's pretty cool.

Post a picture :)

There you go. It's less noticeable in normal light but it's clearly visible.

We match!! I love this :)

I love it too! I actually posted it on another sub the other day and there were a few others with it. Yours look quite cool though.

Now, I know in my case this is caused by minuscule pigment in my iris—but what causes this in normal people?

Emmmm delicious homochromatic eyes FTFY

Let's just head over to AskScience and get this sorted out.

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:P The photographer moved them out of the way for that picture. The little hint of turquoise is her gloved finger holding my eyelid, quite forcibly, up.

You see, we hate bright lights. So of course they use the brightest motherfucking flash on the planet to do eye photography :P

Hi Alex! I have albinism too. :) Do you have friends to help you cross streets? Mine help me out on the sunny days, sweeties they are. Do you have a cane? I do but I don't use it because it's a little embarrassing for me, a lot of people don't know I have albinism (my case is more mild). How do deal with these kinds of things? These are vague questions, I know, I'm just excited to connect to someone else with albinism.

Neato! Will you marry me? :)

I grew up in a small town, so I didn't encounter a lot of light-controlled intersections. Whenever I would, I normally had family and friends with me or I would just follow everyone else. Today, I use a monocular to see the little screen with either a hand or walking person, and I just walk when it tells me to. In non-light controlled intersections, I just listen for cars (I can hear them a lot sooner than I can see them) and cross when I feel it's safe. I've had a few rogue or rushed drivers who speed by, but so far I've never been hit.

I don't have a cane, they tried getting me to use one and I refused. It's partial to being embarrassed by it, but I also don't need one (canes are usually used so blind people can get a feel for the surface coming ahead). Canes are great for letting drivers know you're blind and I'm sure they'd be a little more careful if they knew, but I still don't like the idea of using one.

My albinism is pretty similar to OCA 1, the most obvious kind, but even then people don't say anything. It's curious, though. I met a girl with ocular albinism a few years ago and she looked completely normal, aside from her large glasses. When she told me she had albinism, I didn't believe her :P

Awesome thanks for the response! I'm glad I'm not the only one feeling uncomfortable with the cane, I live in a large city and I still don't often find use for it. I (believe) I have ocular albinism type two, so it's not nearly as noticeable, lots of people don't believe me the first time I tell them either! It's super cool to hear about your experiences, thanks for posting!

I live in a large city now and it's a lot easier to navigate just because there are a lot more options like buses and trains. The only major street I usually have to cross is the one next to me, so I can get home from the bus stop.

Lots of people don't believe I have albinism because I don't have red eyes :P, it can get pretty ridiculous.

That's always the first comment I get! "You don't have albinism, your eyes are blue."

We have so much in common :P

I know someone who's getting internet lucky tonight.

Well, I mean, I'm going to pop over to /r/gonewild after this.

Lmao. Ah, and I was just thinking that love was in the air.

Nah, not this time. But hey, maybe next AmA! :)

Do you dye your hair black and straighten them, put on vampire teeth, dress in black, put fake blood on your mouth and walk around at 7AM saying "I love the taste of blood in the morning!" every time you see someone pass by, then start following them until they get to their destination?

That'd be silly, the sun rises at 7 and I'd burn up! (Or sparkle, depending on who you listen to).

However, you have given me a really good idea for Halloween!

Nobody'll take you seriously on Halloween, they'll think you're not actually eating children and you're doing it just for show. You should do it on the next full moon. Tell them you won't eat children if they make you a castle on top of the hill next to the graveyard and they sacrifice a virgin every month.

Solid idea, but I think we should bump the virgin sacrifices up to once a week.

If this works, you're invited to my castle! I promise I won't each your children^probably

A normal child a day, can be replaced with a pet once a week, and keep it to a minimum of 1 virgin a week.

Child is considered from fetus to 17 years old and 364 days.

And if you eat mine I eat yours.

Jokes on you, I don't have kids. I've tried many times, but when it gets hot and in the moment... my thirst for blood kicks in :(

It must be hard. You need to find a girl to impregnate and a girl to eat next time you try. She'll run away but she'll still have your child. I heard children of your kind eat their mom to survive their first few weeks of growing up before going back to their father the same way salmons go back to where they were born.

Do they have like condoms for teeth? That way I can bite but either not affect anything or just not penetrate?

Hmmm you could try a mouth peace.. But you'd need to use a huge one in case your teeth are sharp enough.

Or I can just not have kids, that way you can't eat mine.

What sunscreen do you use?

I generally don't use sunscreen because I'm a rebel, and then I cry like a little bitch when I get sunburned and it hurts :P But I do have several bottles of Coppertone SPF 100 :)

Do you worry about skin cancer at all?

You know how people in their 20's go out and drink heavily every night and are completely ignorant to the damage they're doing to their body? It's a lot like that. I've talked to several dermatologists and attended several sessions on skin care specific to people with albinism—so I know the risks involved and that we have a much higher chance of developing skin cancer I just... don't care? I'm aware, it's just... I'm not worried, which is stupid because sun exposure is sun exposure but... I'm sure you understand my mentality.

Not unlike me smoking cigarettes.

What are nicotine withdrawals like? I know it's not as easy as just quitting and moving on, but what happens if you just stop?

Don't start. Cigarettes are Satan.

Don't plan to, but the addiction and withdrawal parts still fascinate me—from an observational point of view.

At first it is physical cravings. Your mouth feels weird, and you feel like shit.

After the first few weeks though you get psychological cravings. "Just one won't hurt" "You can't quit full stop, you need to taper off" "Just one and I can get by for the next few days".

You know they are terrible for you, but you can't replicate that feeling. You just have to let yourself get over it.

I have been clean for about a month, and I would not say that I am over it yet, but I'm on my way.

Congratulations on making it that far, and best of luck for the future :) I'm told quitting smoking is one of the most difficult things ever, so glas to see you're doing well!

Headache for a day or two, you get pretty grumpy. There's not that much to it, the nicotine is gone from your system in 48 hours. The physical withdrawal is over in a few days, but the psychological addiction makes you crave cigarettes every time you see one. Or smell one. I quit for almost 2 months, the first cigarette after that was heaven on earth.

I remember someone here talked about how nicotine and stress relief become hardwired for life. So even if you manage to quit and do away with them forever—every time you're stressed out or sad, well there's cigarettes!!

My dad used to smoke for years, before he went to the doctor and they showed him that crude mockup of what your lung looks like from smoking. He quit and never looked back—now he's an alcoholic :P I guess you just trade one for the other.

How many albinos do you know? Any in your family?

There's only one in my family, a cousin from my mother's side of the family who currently lives in Mexico.

That I just know? Gosh, hundreds. I've done three conferences and networked extensively, so I've met heaps.

WAIT! DOES HE LIVE IN MONTERREY AND WORK AT THE AIRPORT?!! There's this guy with albinoism that works there and every time friends go there I always tell them to see of he's there and they see him.

My cousin is female, in Jalisco—Guadalajara to be specific. But I should fly to Monterrey and say hi to your gentleman :)

What has been the strangest reaction you have encountered upon someone seeing that you are albino? Have you ever encountered discrimination because of it?

Most people just stare and move on, it's extremely rare that anyone says anything about it. When I was in Australia, me and my host were walking through Sydney when this guy looks over, shocked, and asks "What's wrong with yer skin mate?" Just... imagine that in the thickest and most stereotypical Australian accent you can, I promise you it was just like that.

i've never personally experienced discrimination, but I know several people who have. I'm going to start sending out resumes and job hunting soon, and I can assure you it'll probably happen once or twice.

Do you wish you'd entitled this thread "Ask an albino adept at alliterations anything about albinism... again" instead?

I do! Next AmA.

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20/400 uncorrected. So, basically, what you can see perfectly fine from 400 feet away, I have to be 20 feet away to see the same thing.

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Yeah, it's pretty bad. I have distance glasses but, on a good day, they only get me up to 20/100.

Jesus. I thought both my eyes being at 20/125 was bad.

20/100 - 20/400 isn't that much of a difference, it's more in sharpness and detail than it is in actual distance vision. Still, I'd prefer 20/20 :P

You and I both. From a gingerly guy, I feel most your pain. Thanks for the AMA, very interesting.

Has South Park every done an albinism joke/episode? I still remember the ginger episode and... wow.

What do your parents look like in comparison to you?

I'm Hispanic, so they're very very dark skinned.

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I'm 20. Almost old enough to go to Vegas! :)

1

Strange. It says 1. When it quotes it changes to 20. Refreshing page and it stays on 1.

Fixed! Reddit recognizes lines started with numbers and automatically makes a list, which is great if you're making a list, not so much if you're stating an age (and not starting with 1, either).

Don't

But... gambling! And strippers! And escorts! And gambling!! :P

I've been to Vegas, like 7 years ago, and it was meh. I like gambling, but it's not worth going to Vegas for.

I hate living here. It's so Fucking hot. Nobody realizes alcohol does not hydrate and almost die. Alot. So it's full of stupid dunk people. And the only fun things cost a ton of money or are way the fuck outta the city.

Isn't Vegas like one of the most economically depressed regions? It just seems like a tourist filled mess with lots of alcohol to go around and money to be lost at the casinos. I mean... it's one of those places where you go once just to say you've been, but I wouldn't put it anywhere near the list of best cities in America.

Don't knock it until you come here man. It's pretty sweet

I went to Vegas in 2007, and it was pretty meh (and very hot). I mean, I guess unless you're 21 Vegas is going to suck, but it just doesn't seem all that exciting. I can gamble here!

Do you glow when you're underneath a black light? I hope this doesn't sound rude. I am genuinely curious.

No, sadly :( I seriously wish I could. Seeing how things like white shoelaces and certain inks just glow so bright under a black light, I just look at myself and think "Why can't I do that??"

One time, when we were watching a movie in class with the lights off, one of my classmates told me that I glow in the dark. I guess that's as close as I'll get :P

Hello! What's the best thing about having albinism? Anything people wouldn't realise about it unless they had it?

Being incredible rare and unique is definitely a fun upside. I don't get a lot of comments or questions in public, sadly, but I can do these AmAs and answer heaps of questions!

One of the things most people don't know about is the visual impairment. My vision is just downright terrible, and while I have lots of tools to get around it—I'll still never be able to drive to pick up on body language or text without holding my phone .5 inches from my face.

Hey Alex, good to see your AMA again. :)

Just curious, I see you've made a few mentions of your inability to pick up on body language. Can you elaborate on that?

Glad to be back!

This wonderful TED talk by Amy Cuddy covers the way we use body language to express ourselves, and how other's body language changes our perception and feelings about them. A lot of these things tend to be unconsciously and even received unconsciously, but they play a major role. So when you think about being in a group or one-on-one setting... little cues like a person rolling their eyes because I said something bad, I can't see that. Maybe a body movement to indicate that I should leave, I can't see that. Think of all the social cues girls put off when they're trying to show you they like you—blushing, winking, stuff like that, I can't see any of that.

A lot of us are unaware of how important body language is because it's so unconscious and normal, but not being able to physically see and pick it up is a major disadvantage.

So it seems like the smaller cues, like eye rolling, blushing, winking, eye brow raising are hard for you to see because of your vision?

I would imagine an annoying stance like hands on the hips, angled a bit with "the look" would be easy for you to pick up though, right?

Right. When I stand, what we in psychology call a "social distance," from another person, I can't make out the finest details of their face. Shape, eye colour, whether or not they're wearing makeup, etc. Something like being able to count the number of lashes they have—nowhere near that kind of detail. So while I can figure out I'm talking to a human and make out their face, roughly, I can't discern any detail—that's why I'm better with voices than faces.

Body postures are easier to pick up, but I generally don't pay attention to them because I try my best to make eye contact and have as normal of a conversation as possible despite the fact that I can't really make out the other person's face.

That's both sad and awesome. Sad in the way that you don't have the ability to see those details, but awesome that you've learned to overcome them.

You're an amazing person. Thank you for answering my questions. :D

To an extent. I'm happy I live in a time where there's a lot of adaptive technology, but there's just some things you can't overcome. I guess that's just more reason to be super vocal :)

Had you albinism had any affect on your dating life?

Considerably. Physical appearance is the primary characteristic we use to determine whether or not we're interested in someone and whether or not we'll like them. So if you look completely different from everyone else....

Have you ever heard of Brother Ali? He's an awesome albino rapper. Thats it.

You're awesome for doing this.

I have, though I'm not tremendously fond of him—I'd love to meet him, though!

Thanks :)

Which type? I'm assuming one of the 4 types of oculocutaneous albinism, and not something like Hermansky-Pudlak?

There are actually now 7 types of oculocutaneous albinism :) I have OCA 4, as confirmed by DNA testing.

There are definitely subtypes of OCA1 (1A and 1B) and OCA2 (minimal pigment, yellow 'mutant', platinum, temp-dependent) but to my knowledge (I'm a dermatology resident) there are no "type 5 - 7."

Edit: OMIM does list some loci/mutations for 5-7, but they don't appear to be commonly tested for. Surely that will change in the near future.

There's OCA 1A and B and 2 - 7. OCA 3 and 4 have been recognized for ages, but 5 - 7 are very recent (early 2013) discoveries.

They do have clinical testing for 5 - 7, though. Earlier this year, they tested my DNA to determine my OCA type and 5 - 7 were on the panel. I was astonished to find out that they're already available for testing on a clinical and not research basis, but they are. OCA testing just isn't common because it really doesn't matter.

With people that have very light skin pigmentation, what would you consider the best to acquire a tan for a more natural skin color?

If you have some pigment, natural sun tanning in theory should work. Otherwise, spray tanning (as long as you do it right) can somewhat work. I mean, you'll still orange, but at least you'll be darkish! I have a friend with albinism in Canada who dyes her hair and does spray tans and everything to look normal.

Hai alex! People are born with the perfection and imperfection. You might differ from other people. But i believe you are good at something, do you mind to share what is your speciality? Something that you really proud of. Something that rarely people capable to do . Thank you in advance. Have a nice day alex!

I've never been one to have much confidence—generally more pessimistic. But I'd probably have to say either writing or general intellect, probably more to the intellect side.

From my observation, people with albinism tend to be a lot smarter, or at least a lot harder working. When I was in high school, a lot of my friends with albinism were taking heaps of AP classes. I don't know, though, if we do it because we're smarter than everyone else—or if it's because we feel we have something to prove/need to make up for something.

Have you heard about people with Albinism being murdered in Africa so witch doctors can use their limbs?

I have, it's very sad :(

Maybe some folks in africa just really don't like white things? Doesn't seem like white rhino's are faring well there either :(.

It's a cultural thing. The belief is that we have magical powers, so our limbs are used to make potions that supposedly make people rich, handsome, whatever. There are 3x more witch doctors than there are medical doctors, so who are the people going to trust/go to?

They also think we don't "die," we just... disappear. The body just floats away and vanishes. It's really weird.

Weird question but is your hair soft?

I met someone who was albino and her hair was unnaturally soft, it was like a kittens fur. I was just wondering if it was a common trait or if it was just her.

Somewhat, it probably has to do more with the products we use rather than natural hair texture.

However, there could be a link between lack of pigment in hair and its texture. Definitely something to look into!

Hi! Other than vision problems and light sensitivity, do you have any other physical quirks that can be related to albinism? Wow, that was hard to put into words.

Thanks for doing this!

Well, beyond the obvious lack of pigment and physical appearance, no :P So far we've found nothing physical that correlates with albinism.

There is a genetic condition called Hermansky-Pudlak Syndrome, of which albinism is a symptom. On top of albinism, those people have a bleeding disorder, and can develop colitis and/or pulmonary fibrosis. Thankfully, I don't have that condition :)

What is the hardest thing about albinism ?

Definitely the visual impairment. I get along pretty well now, but back then it was pretty bad. Even today, I'll never be able to drive, ever. And I can never pick up body language.

If I paid you $1 million to stay in Tanzania for 1 month, would you do it?

I would, but I'll only tell you why I have the balls to do it after you pay me my million. And I'm not doing no big checks or Western Unions—you're putting cash in a briefcase.

Spoiler: spoiler

Take a look at this page, by the way, thanks for all the answers dude!

I've never heard of that organization before. Do they work with the UN?

Here in the States, UTSS and Asante Mariamu do the main albinism awareness and assistance things in Tanzania, including talking to the UN.

Okay?

Okay.

Have you ever met powder?

I haven't, though I'd love to!

If you had a hooker's dead body in your trunk that was already starting to smell where would you dispose of it?

I'd tell Siri "I need to hide a body" and she'd recommend the closest, best option.

Try it!

Sorry if any questions were already answered. Sorry if any question seem offensive. I do not mean that way I'm honestly just curious and don't always have the best wording. When did you realize you were different? How was school? How difficult is the vision problem day to day. I heard that albino had red eyes. Is this just a myth? Is the eye site caused by albinoism or is it just you? Do you and friends/family joke about it? Do people say things at all? If yes what do they do they say? How do you feel about sloths? I think that all my questions. Thank you for doing an AMA.

Hey, that's what I'm here for, to answer any and all questions! Let your curiosity roam free!

I do remember one moment when I was in middle school where I lamented over being different and wondered why I was different and why me of all people. What would it be like to be normal, even just for a day? This was middle school where popularity and cliques start to matter, so that's probably what brought it about. But I've always been an accepted member of my community and friends with everyone and everyone just accepts me so... in a sense I've always felt normal, personally and socially speaking. Of course I look different, but that never affected much (besides dating).

School was actually good. I grew up in a small town with only one school for each level of education (elementary, middle, high). So I grew up with my classmates and by the time we got to high school they were all just used to me and accepting. However, I've spoken to people with albinism who had to switch schools and/or grew up in a large city with multiple large schools and they experienced lots of bullying and lots of problems making friends.

Vision today is not much of a problem. I have monoculars and magnifiers and glasses and I can zoom into my screen and do all kinds of things to make it easier. The only limitations are really that I can't pick up body language, and I'll never be able to drive regardless of all my current visual aids. However, all this has been within the last two years. Before I had all the awesome stuff I do now, day to day was so bad that I actually couldn't cross light controlled intersections because I couldn't see the little crosswalk display.

It's a myth. You know how when you take a flash picture of someone in the dark, they get red eyes? It's just like that, but it's exaggerated in albinism because a lot of people with albinism don't have pigment in their irides. So the light goes straight past them and illuminates the blood vessels in the back of the retina, ergo red eyes. Save for very special lightning conditions, most people with albinism have blue eyes, maybe a hint of violet.

It's caused by albinism, but it varies per person. Believe it or not there are people with albinism who have 20/20 vision. My distance vision is on the worse end of the people I know, but I have better reading vision.

We'll all make the occasional joke every now and then. It's not like a tradition or like something that obligatorily must happen—but my family and friends are all accepting and I'm comfortable enough with albinism that we can all just joke about it.

Most people in public won't say anything. Occasionally I'll get some rude comments which I just ignore, but most everyone just stares and moves in. It's kinda irritating actually, I wish they'd ask heaps of questions.

I want a pet sloth now, can you get me a pet sloth?

W would if I could.

You're looking at this the wrong way. We must team up and steal a sloth from the local zoo!

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Maybe a bottle? I never wear sunscreen, even though I should. I usually only wear it if I'm going to the beach or somewhere where I definitively know I'm going to be spending an hour+ in direct sunlight. I still have three bottles of SPF 100 from... June 2012? I should really replace those.

Do you have nystagmus?

Also wanted to say you have excellent taste in shirts, and reading material.

I do.

Thanks, I wore it to the Charli XCX concert last night, appropriately :)

After reading this, you seem like one cool hombre. Just wanted to say that.

Everything I was gonna ask I know now, so... What's up?

Thank you :)

So, I went to my very first concert last night, and now I'm looking at venues and stuff to buy tickets for more. So far no luck, most are sold out or wicked expensive! The Usher concert was like $172 for really shit seats on the side!

A woman in British Columbia filed a human rights complaint against the restaurant chain Earls because they called their beer Albino Rhino and she found it offensive. They've since changed it to just Rhino. Do you think she was being overly sensitive or would you find that offensive as well? Really I never understood the big deal since there are actual albino rhinos but then again, I don't have albinism.

I followed that case really closely, and there was especially huge uproar because it cost the restaurant a lot of money.

"Albino" is a generally a word we use to describe animals with albinism, and not humans. For humans, everyone kinda has their own feelings about it. I personally don't care at all, but I know some people who will flip the fuck out if you dare use it.

We prefer to use "person with albinism," and what's what I always type when I refer to someone just to be professional. While that does add a sense of political correctness, it's not exactly the standard—it's just the best thing to use to avoid pissing people off.

I think her main argument was on the heels of how Hollywood has to use the evil albino in every single movie ever, and this was just another way that we were being put in a negative light. Personally I don't really care and I think she's just overreacting, but in the end she won so... what can you do?