I have albinism—AmA

Please tell me you dance REALLY bad

Oh yes!

Proof or gtfo

Maybe :)

Have you seen the movie the heat I think it was?

Never. Wasn't really well received by the community, though.

I have albinism and I can dance better than most white people (the lessons probably helped...)

You had lessons, so it doesn't count :P

But... Aren't you like the highest of white people?

Doesn't mean I can dance :P

I know this will come off as jocular but I am legitimately curious: does the carpet match the drapes?

It does :)

you might not understand my analogy but does the penis/scrotum match the rest of your body?

Yes, foreskin wise anyway.

googled albino penis. Is this accurate?

Those are mushrooms....

He's asking if your penis is equally white or if the bloodflow makes it purple-ish.

OH! Yeah, it's purple.

Dude, we need pics of your purple wang.

I mean, for the right price... ;)

Never thought Id agree with someone who thought their sister is sexy, but a few months back there was a HUGE discussion on how no one has ever seen an albino dick, so we need to see it. And im a girl, so its not weird

I mean, for the right price... ;)

This exchange was the first thing on Reddit to make me laugh hysterically and clap like a winded seal for weeks. Thank you so much.

HAHAHAHHAHAHA!!!!!! :)

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I'm sure that's normal :P

What's your ethnicity?

Hispanic :)

Do you find that you miss out on any of the culture or tradition that can come with being in a hispanic family due to your albinism?

Sorry if that's an awkward question.

I've never really been into the culture to begin with. Growing up in America and being exposed to American culture, I've always eaten pizzas and cheeseburgers and wanted to travel and so on. I mean, I still go to Mexico bare minimum once a year, and still eat Mexican foods and so on. But I've always been the most American of my family.

My high school friend was(is) albino and of Korean decent. She Mostly just referred to herself as 'albasian' and ignored any remarks on her ethnicity haha

That's really clever :)

You could be albexican

My nickname on my second cruise was The Albino Mexican, which we shortened into Albex.

also works as a shortened version of "Albino Alex"

And then I was the Albino Ninja, which is weird because ninjas are supposed to be able to see :P

Woah. I would have never guessed. I met this black guy who was albino though and I wouldn't have guessed either until he talked. He had like the classic deep black guy voice.

You wouldn't even guess if I spoke. I don't have a Mexican accent when I speak Spanish.

I'm also Mexican and I don't have an accent but black guy just had this voice, I'm not being stereotypical but, it was like the spot on stereotype for a large 35 year old black male. He also had a few features too that were similar to a black man, but I don't want to sound like I'm generalizing all black people.

I understand, and yeah it makes sense. Luckily, I can hide my Mexicanness :P Except for my last name, though :P

Can someone with more skill than myself PLEASE photoshop what you'd look like if you had a Hispanic skin tone. Even with all my mental strength, I cannot picture it. I just keep seeing a Caucasian.

Someone on one of my AmA's did it once. PM me and I'll find it for you when this is done.

Have you ever been called a Targaryen?

A few times, but only in these AmAs.

Is it true that at the age of 15, you killed your entire family with a hammer then was released early from the psych ward (even though you felt you should stay) and rented a one bed hotel room with Jim Carey?

Yes! But what happened with Jim Carey remains a mystery to this day.

Hahaaha great response! :P

Here is a video to help with the context of my bizarre question lol

http://www.youtube.com/watch?v=kZpefzkw5_8

HA! I love how disturbed Jim is!

Have you thought of selling bodily fluids to superstitious Africans for large profits?

I've considered it, but the shipping costs would be more than any potential profit.

You're a clever little bastard, Alex.

Thank you :)

I think you're my new favorite redditor

Wouldn't that be /u/Unidan?

Ah, jeez.

Come on, you know you're everyone's favourite.

Also, UNIDAN COMMENTED ON MY AMA!!!!! MY LIFE IS COMPLETE!!!!!

Does being albino give you any sort of life hacks/ shortcuts?

Legally blind people go to college for free in Texas, if that counts.

I'm very naive when it comes to albinism. I didn't know people with albinism were legally blind. To what degree are you blind?

It varies from person to person.

I'm 20/400 without correction, meaning that something someone with perfect 20/20 vision can see from 200 feet away, I have to be 20 feet away to see.

To make it simpler, you know that eye chart with the giant E on top? I can't even see the giant E, it's just a black blob.

If that's the only problem, is your vision good enough to be corrected to 20/20 with glasses? I'm 20/400 in one eye and 20/800 in the other without correction, but glasses work fine for me. Are there other issues at play than just nearsightedness?

Edit: Nevermind, I see you answered this below. Thanks for the detailed explanation!

However, there are people with albinism who have 20/20 vision naturally. We're not sure why.

What do you mean we? Do all the albinos do their own testing on each other?

As a community, we don't really know. But I guess the real people with interest—who are the dumbfounded ones—are the doctors that do all this. There are three doctors/researchers that do a lot of the albinism research, and I just like to say "we" because I follow it a lot and have participated in albinism research myself.

Thats it? Helpful but sounds like it sucks. Sorry about your conditions, though im sure that you have no problem with it. (:

And we get handicapped placards!! But they're not much use if we can't drive :P

You kinda get used to it. And with the right technology I can do everyone most everyone else can :)

That typo...

I don't see one :P

I can do everyone most everyone else can

YOU SLUT.

You know you want this.

Thats awesome for you. (:

Thank you :)

Do people make fun of you?

Not anymore, but it happened occasionally when I was a child.

Did it stop when you found out your super powers?

It did. I showed that bully who was boss.

You showed the sun who's boss?

I did, that's why we have global warming. Sun's still upset about it.

Maybe if you didn't reflect it to the southern hemisphere we would have more penguins :*(

Just go to Antarctica.

I am a preschool teacher and have a two year old in my class that has albinism. I was already familiar with albinism prior to having this child in my class. I volunteered at a local hospital with a girl who had it and I also chose albimism for a research project in high school. Albinism is definitely an interesting topic to research.

If there was one thing I was reminded about albinism was that those who are diagnosed with albimism are very intelligent. What is a subject area or something in general that you are intelligent in?

Also, as a preschool teacher of a child with albinism do you have any advice on what I can do to help him, like what are some things you wished people did for you as child?

It's always nice when people take an interest in albinism. I appreciate the extra mile you've gone with this :)

I'm pretty good with every single aspect of the condition, naturally :P Politics, philosophy, world events, things like that. I've noticed a lot of teens with albinism will take AP classes and usually get better grades than their normal classmates. Although, I don't know if it's because we're naturally smarter, or we feel the need to work much harder to "catch up" to those around us.

Get adaptive technologies. CCTV, monocular, magnifier, large print, audio, etc. Push for the district to get as much as possible. Every person with albinism has a preference for visual aids, and finding the right one early is crucial for adaptation and earlier independence. I have a monocular now and I don't know how I ever lived without it. And all I can think about is how much easier my life would've been had I had one in school.

You get to rock a monocle and actually need it?! You are one awesome dude.

There are people who use monoculars just for fashion and stuff?

I just have this nagging suspicion that the Monopoly guy could see just fine.

Also, I'm from Atlanta, where anything is fashion.

The Monopoly guy uses a monocle. There's a difference.

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HAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHA!!!!!!!!!! OH GOD!!!!!!!

Stop spying on us :P

How is Albania this time of year?

Pretty cold, but I'm from Antarctica natively so I can handle it.

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They do!

Hey Alex... It's Madeline, your best cruising buddy! Saw you on the front page! It's a small world!

Liar! I'm not on the front page :P

You're now addicted to Reddit i see.

We've now had an albino, someone with vitiligo and someone with a port wine stain. Now we just need 1 with all 3!

Now that's something I'd like to see!

How has it affected your life?

Today, with various adaptive things like monoculars and very powerful reading glasses, not much. I can do pretty much everything everyone else can, except play sports or drive :P

Why can't you drive? Is it a sight defect?

I can't in this state. Most people with albinism can drive safely (and legally) using bioptics. The catch is that each state has a legal threshold for driving. In California you have to get up to 20/160 with the best glasses. I can only get up to 20/200, and even then there's still a fair amount of squinting. So legally, I can't drive here. But other states have less stringent requirements.

I don't and have never understood this. Why is bad eyesight a side effect of albinism?

A variety of reasons. Lack of pigment in the eye results in iris transillumination, which causes photophobia. Our eyes naturally wiggle, called nystagmus, which reduces vision. Our optic nerves are also misrouted, so we have issues with depth perception and can't see 3D effects.

So it's not like a normal cylindrical or spherical correction? Do you get lenses or LASIK to fix the bad eyesight? I'm guessing not. Thanks for the reply.

The only thing that improves vision for people with albinism is glasses. They help tremendously for some and do nothing at all for others, it just depends. There are a few drug trials aiming to improve vision, but there are no results at this time.

I was 20/200 without my glasses before I had lasik, and I can tell you first hand that 20/200 is nowhere close to safe to drive. Even if I went without my glasses or contacts for a day or two, I would never feel confident driving or even riding a bicycle like that. For those who don't know, that would mean a person is barely able to make out a stop sign from 50 yards and wouldn't be able to read the letters on it.

That's why they also use bioptics. 20/200 with the best correction for just general sights, but bioptics to see stoplights, signs, etc.

Is the huge smile on your photo's part of your albinism or are you a positive person?

It just tends to be like that. I hate my smile :P

This is a serious question, but it isn't going to get a serious answer. Are people's buttholes naturally darker by pigmentation, or unnaturally because of staining?

I don't really know, but I'm going to assume naturally by pigmentation. Even the absolute worst fecal matter stain can be washed out of most everything, so I don't see how that can happen.

I think he was trying to get a picture of your butthole. Nice dodge. :)

I don't even know how I'd take that! :P

Is there a reason for the fro?

My hair just naturally does that, and I get too lazy to go get it cut before that happens.

any chance I could get you to shave the sides, put on red lipstick, and sing 'wrecking ball' for this AMA?

I mean, for the right price... ;)

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So, how much is Reddit offering?

About tree fidy.

Eh, that's a little low. How about $3.51?

tell me....... Exactly what is the right price?

I need about $3.50

God Dammit Loch Ness Monster, I ain’t gonna give you no tree fiddy.

Aww :(

I know a black albino. He works out at my gym. He's jacked as fuck, bald, and has a white beard. He doesn't talk to many people. He just lifts and occasionally sings Eye of the tiger while wearing earphones.

I wish I could be that awesome.

Hi, I'm a first year high school science teacher and I think I've been telling my kids the wrong thing about albinism. I told them all genetic conditions (like albinism) come in wide ranges of how they affect people, but full true albinos have pink eyes (as in the Iris). In your pictures you appear to have brown eyes, what's the actual incidence of having pink eyes?

Also, is there anything you want kids to know about albinism?

*edit: I scrolled down more after posting this and saw you have blue hazelish eyes. I thought blue was the absence of pigment in the eye (my eyes are) and anything else meant there was pigment. So how can you have a little bit of brown in there?

Thanks!

You are right there's an extremely wide variety of phenotypes in albinism. Some have no pigment, some have dark skin similar to their parents. There's a very very broad range.

People with the most severe form of albinism (OCA 1A) do have a complete lack of pigment, but they'll have blue irides. Most everyone with albinism has blue irides. They may appear red or pink under certain lighting conditions (similar to the red eye effect in photography) but aren't red normally. Mine are a mix of blue/green/yellow:

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

I wish kids knew about the visual impairment associated with albinism. Moat everyone knows albinism means you sunburn easily, great. But we also can't see :P

Blue is the least pigmented colour, correct. I have some pigment in my skin, hair, and eyes (very little, but it's there). There's significant pigment in my irides, so I don't suffer from photophobia. And thus, colours other than blue.

1) Have you ever been told you kinda look like Jesse Plemons (Landry from Friday Night Lights and Todd from Breaking Bad)?

2) Did you lol when you saw that your AMA category picture for "Unique Experiences" was a snowflake?

3) Have you ever thought about buying an albino dog as a sidekick and fighting crime?

I've been told I look like Todd before, but never Jesse. I can kinda see Todd.

I did, and I laughed that it was unique experience. Usually they list it under health.

I actually have a white German Shepherd :) His name is Zeus :)

And a fine name that is!

My brother picked it. Just like the Zeus in The Lucky One.

Hi Alex! I was wondering, with all you've dealt with in your personal life, what keeps you motivated? Also, who do you draw inspiration from? From all the answer replies I've read from you, you seem like a very nice down to earth dude. So whatever you're doing...enlighten us!

Randy Pausch once said "We cannot change the cards we are dealt, just how we play the hand." Sometimes people get dealt bad circumstances, but you've just got to keep going.

What's it like living in Albania?

It sucks. We don't get any of the cool American TV shows like Jersey Shore.

One of my friends is an albino, he says because he has never experienced anything different he doesn't consider himself disabled, just wondering if you feel similarly?

I do. Most people will consider the visual impairment a "disability" but I don't feel that way.

I think that is an awesome way of going about it. Props to you :)

Although, when I was a kid I'd frequently think I couldn't do much due to being legally blind.

Australian here. How did you like our country? Other than Sydney, what else did you see/do?

I just saw Sydney, but I loved it and hope to go back soon!

I saw a documentary once about you guys. It was called Powder. Do you have the same powers?

I'm not allowed to talk about my magical powers :)

Why can't you drive?

I can't in this state. Most people with albinism can drive safely (and legally) using bioptics. The catch is that each state has a legal threshold for driving. In California you have to get up to 20/160 with the best glasses. I can only get up to 20/200, and even then there's still a fair amount of squinting. So legally, I can't drive here. But other states have less stringent requirements.

Do you find that the media uses people with albinism as objects ("props" in music videos, fashion ads, etc..)?

Not that I've seen. A lot of movies use the "evil albino" character, though.

Do you have any family members with albinism?

Just my great grandfather and a few cousins in Mexico.

I havent looked it up but any health issues that comes with this?

There's a wide range of visual issues and we sunburn easily. That's about it.

what color are your nipples?

Light pink.

Has affected your ability to get hired?

I've never applied for a job, I'm a full time student.

I've heard both good and bad stories about applying, though. I think the key things to remember is to go for a job you can do either alone or with some adaptive technologies.

I'm sorry if this is kind of offensive but in the spirit of AmA I'm just going to go ahed. How do you deal with people who stare at you in public? I can imagine it must happen a lot. The reason I ask is because the other night I was waiting to take the subway very late at night and a man walked up and stood behind me a few feet away. Being a small female this weirded me out a little so I kept looking back at him out of the corner of my eye until the train came. When we both got on I realized he had albinism. He must have thought this was why I kept really weirdly looking at him and I felt really bad thinking about how people must do that a lot.

I'm legally blind, so I don't notice people staring, at all. Unless they're close, I can't see someone's movements or see if they're looking my way. I'm very well aware people stare because people tell me, but I never notice.

The thing about staring is that people do it because they're curious. Tell me, if you saw a woman with two heads walking down the street, would you stare? I know I would. But not in a "OMG WHAT A FREAK" way. I'd stare because you don't see that every day. You don't seen an albino every day, either.

Neither do you!

Touché.

I remember getting the impression from your last AMA that albino people seem to stick together. Can you shed some insight on that?

When you're a person with albinism, another person with albinism is the only person in the world who can truly understand what you're going through and how you feel. I know that's unfair to mothers and sisters and best friends and counselors and teachers and all those around me who try their best to understand. But only another person with albinism truly gets the full effect of what I've gone through.

What is the strangest question anyone has ever asked you? (In real life or over the internet)

"Can you see yourself in a mirror?"

Well.... can you?

Damn vampires... ghost.. always using +stealth to hide from mirrors.

I can, but not with much detail :P

Did you ever get estranged by others because of your albinism? And if so, how did you handle it?

I think I was estranged more for my nerdy personality than for my albinism. But one way or another I just did my own thing.

what color is your b-hole?

Ask my gastroenterologist.

If I eat your flesh will it grant me magical powers?

Maybe. Wanna find out? ;)

Have you ever dyed your hair? :)

Never. I'm planning to, though!

Any specific color you thinking of?

People have recommended brown or black. I'm just going to do it for a week or two to see what it looks like, and then cut my hair.

Make sure to post the results to Reddit!

I will, next AmA :)

What's your favorite candy?

I'm going to go with Snickers, though I haven't had one in a while.

Have you ever used make up or let someone put make up on you? Or be a human canvas with pen? One day would like to date a guy comfortable enough for me to explore the artistic possibilities having milky white skin offers.

We did, once. I'd love to have someone put makeup on me, though—this skin is a perfect canvas.

if this was written by a guy to a girl and not vice-versa the creep factor would be off the charts. I'll leave my thoughts on this comment as is to my self...

Oh gender roles!

would you rather be a ginger?

Nah :P

thanks for being a good sport. i do have a serious question. are any of your internal parts effected by this? like do you have any white organs that aren't normally white, etc.

That would be so awesome!! It only affects the eyes and skin, though.

Is there anyone else in your family with albinism?

My great great grandfather had it. And a few cousins in Mexico.

A few weeks ago we had a discussion about what an albino penis looks like. Google turned up nothing. Can you show us yours or tell us where we can find some?

I mean, for the right price... ;)

Definitely a Targaryen

Is that good or bad?

I was listening to a special about people with albinism on the cbc, and some people were discussing being called "albino" and how it's a no no since you are identified only as an albino not a person. What are your thoughts on the term connotations? For further thought, my phone doesn't like the term "Calvinism " (albinism) but is fine with albino.

"Person with albinism" is generally the preferred term. Albino really depends on who you talk to. Some people accept it and use it all the time. Others will tear your head off for using it.

Do people ever mistake you for a marshmallow?

Only when I have giant afro hair, which I don't anymore.

Well that's good, but on a more serious note what measures do you have to take while in the sun?

None, because I feel invincible and I'm just lazy :P

Really, I only wear sunscreen when I go on vacation. If I'm going to take a 20 minute walk into town, I don't bother with it. I'm always told I should wear sunscreen whenever I go out for extended periods but I never do, and I'm fine, so...

Can confirm, initially mistook OP for a marshmallow.

Just don't roast me over the fire.

But dropping you in hot chocolate is ok?

I guess so.

Hi Alex, Do you have any tattoos or plan to get any? I think your skin is made for ink.

Oh and I read you have a dog, but do you like cats?

I'd love to get one at some point. Agree that my skin is a perfect canvas :)

I do, two :) Not sure of their breed, but conveniently one is white :P

Aside from the obvious ways, how has this affected your life? I assume you sunburn quite easily

The visual impairment has always been difficult. It's hard when everyone else can see just fine and you can't, yet they all assume you can.

The social stigma is also awful. There's no teasing, but people aren't really apt to approach or befriend someone who looks different.

Are you a fan of colored contacts?

They're cool if you're incredibly unhappy with your eye colour. I don't need coloured contacts:

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

Is there a higher risk of burning when you get in the sun? I know how it works on a genetic level, so it actually shouldn't, but I still wonder.. Do you get sunburnt faster than non-albino's?

There's a much higher risk, as we can't tan and just burn. But just wear sunscreen and stay in the shade and you'll be fine.

Some parts in Africa value albinos and will often cut of some limbs to take to the witch doctor, there was also a belief that albinos dont die but vanish. So what are some misconceptions and retarded beliefs about albinism that you've heard?

Beyond those, people think that everyone with albinism has red eyes. We don't, we have blue eyes.

Do you ever mess with people because of your albinism? Like do you have a sense of humor about it?

I used to trick people into thinking I was colour blind :P But overall I joke about it plenty, and so does everyone else.

Did you ever see the movie Iron Sky? How accurate is the albinizer in that movie?

I have not. But from experience, people with albinism are almost never portrayed correctly in film.

Have you ever thought about dying your hair and/or using a tanning lotion or something? Or do you just not care?

I've considered it a lot, just not something I'm willing to do right now.

what's your favorite color?

what's your favorite music genre?

what's your favorite band?

what's your favorite song?

what's your favorite food?

have you ever been to Cedar Point?

if you could hang out with any celebrity, living or dead, who would it be and what would you do?

Blue

Pop (but not Justin Bieber)

Um... hm... I'm going to go with OneRepublic

Presently, Unique by Lenka

Pizza all the way! or Pringles :P

Never, but I've heard really nice things about it. Don't know what I'd do in Ohio but if I ever end up there...

Tom Cruise. I'd talk to him about his popularity on Reddit.