I have albinism—AmA

When I was a child, my dad told us that if we didn't stop crying the albinos that lived in our closets would steal our skin so they could walk around in the sunlight.

So my two questions, did you have enough room in my closet, and wouldn't an umbrella be easier?

Umbrellas do not provide full coverage.

I did have enough room in the closet. So much room that R. Kelly and Tom Cruise hung out with me in there.

I was just standing here... and Tom Cruise locked himself in the closet... I asked myself "Why won't Tom Cruise just come out the closet?" Nobody has any answers... and so I PULL OUT MY GUN!!!

Tell me why Tom Cruise in the closet or else I'm gonna shoot someone!

edit: https://youtu.be/Nq_l1tnT8JE?t=8

"Tom Cruise don't come out of the closet I'm gonna cap this bitch!"

Damn, I forgot how funny that scene actually was.

Oh. That actually makes more sense now. Plus now that I'm thinking I've gotten sunburn from reflected light from the water so you would need more complete coverage.

Glad you at least had company in there, I'd hate to think you were bored.

Actually, large brimmed hats are always an option for sun protection, but personally I find them cumbersome.

Now if only I could come out. Like I know gay marriage is legal and all now but... I just don't know :(

What ethnicity are you?

Hispanic.

What is the most difficult thing about having albinism? Is there anything about it that you enjoy?

Definitely the visual impairment. Just not being able to see what everyone else sees: The pedestrian crosswalk indicator, the board in class, the route number on the bus that's coming your way.

I love being unique, and all the places I've been to and wonderful people I've met that I would never have had I not had albinism.

Is it correctable?

To a degree. Glasses can help depending how much myopia, hyperopia, and/or astigmatism you may have. But it's very rare for glasses to get you up to 20/20.

I didn't realize albinos had visual impairment. I thought it was just a pigment thing?

Don't worry, not many people know. Yes, albinism does involve a degree of visual impairment, it's more severe for some than others.

all the places I've been to and wonderful people I've met that I would never have had I not had albinism

Like... clubs for people with albinism or something? Or what else?

More like conferences for people with albinism.

I wasn't aware that visual impairment was a part of it! Best of luck in all your pursuits and endeavors.

Not many people are. Hey, you learn something new every day :)

Do you have tattoos? We always discuss it at the studio if the skin would be ok for tattooing, assuming it is, we always gush about how it must be the perfect skin for color and black and grey work.

edit: can't believe I used the word "gush".

Everyone always tells me that colours would pop on my skin. Yes you absolutely can tattoo someone with albinism. I've never done it because I just can't pick a design, but getting a tattoo is a bucket list item and I will absolutely do it.

My boyfriend has albinism and has a small back tattoo. The colors are gorgeous. The black outline is a stark contrast to his skin. If you do get a tattoo make sure it's badass because it stands out and everyone will ask you about it

I just need to pick a design.

Can you manipulate electromagnetic fields?

Only on Wednesdays.

This is the correct answer

Yay! What do I win?

tree fiddy

Oh dear, I'm afraid I won't be able to pay the taxes on that.

Love from a puppy.

Oh dear... I'm afraid I can't pay the taxes on that.

Is there anything about albinism that gets overlooked because it is not as obvious as the change in appearance?

Definitely the visual impairment. Everyone with albinism has some degree of visual impairment (save for like three documented cases of 20/20 vision). It's a whole host of stuff like photosensitivity, nystagmus, reduced depth perception, etc.

Can you explain a bit more? Like when you go outside are things really bright? Do you notice a difference between summer and winter?

If the sun is in my line of sight, it's pretty much like when the doctor shines a light in your eyes. Just.. I can't see anything, just bright light. But if the sun isn't rising or setting, everything is fine.

You know how you can drive into the sunset and just wear sunglasses or put the thing down? Not me.

It's funny how you said "put the thing down" and I knew exactly what you were talking about.

I was going to say visor but I'm not sure if that's the right word.

No, you were right. Pretty sure it's just "the thing."

It shall hereforth be known as "the thing."

Do car headlights do the same thing to you at night?

Not when they're in my peripheral. If the sun is setting and has gotten below a certain point, it's not an issue either. It's only when it's starting to set.

Your albinism get you laid?

Yes, but only once.

I'd kinda like to hear that story.

There's not much of a story, we met, talked for a few hours, and then it happened.

I wrote and recorded a song for your comment, the tale of /u/AlbinoAlex, Slayer of Pussy:

https://soundcloud.com/kavaliercalm/say-hey

^{Say Hey}

^{C - G, F - G - C
All my bros want to know
what I did to get laid.
But all I did was say, "Hey."
"Is there a trick for getting a chick?"
I only know of one way.
'Cause all I did was say, "Hey."
F - G - C
If you want a girl to go south,
just open up your mouth.}

That's how it's done, right?

Stop sharing my secret to getting laid!

I'm about an hour behind on responses so I'll take a listen later, but thank you for taking the time to do this :)

So how exactly did this conversation go down? Was she into dudes with albinism or did you have a pickup line you were saving for years?

That would be one hell of a pick of line.

It actually just came out of nowhere. Yes there was quite a long conversation. Maybe I'm just trustworthy?

It's your white skin I bet. /s

But was it good?

Eh, 6/10

10/10 with rice.

ONE OF US

Gooble gobble?

What's your favorite kind of sandwich?

Chicken & Bacon Ranch Melt from Subway.

I'm at subway right now, will give it a go!

What do you usually order from Subway?

WE ASK THE QUESTIONS AROUND HERE, BOY

Have you never heard of reverse AmAs?

r/AskReddit

My questions never seem to take off :(

The cold cut combo or the Black Forest ham. Those are the cheapest!

I'll have to try that on my next visit.

My man.

We now need to meet and share one.

Do you often get vampire jokes? They must suck huh

Not really, especially now that Twilight isn't popular. They are fun, though.

Hi! What colour 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/in/dateposted-public/

your irides are not perfectly circular and it is blowing my mind

Shout out to you using the correct plural for iris!

In case you don't get told enough, your eyes are beautiful!

Thank you :)

Hey bro I have that same shape/color of brown. Except the rest is green. We bros, now?

Sure. Bro hug?

Man, eyes are so cool.

They are! They let us see and stuff.

My brother has eyes like that too!

Sis, is that you? When did you learn how to browse Reddit?

Have you ever been curious about what you would look like if you didn't have albinism?

Hope this doesn't offend you.

http://imgur.com/QXXM9T5

Everyone's been asking for this, hope others see it.

Sorry.

I want to meet her, have a pale battle!

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Zoey 101 :)

This guy gets it

And Breaking Bad, but Zoey 101 will always be first!

Stomp the grapes my man

I really want that guy's hat.

Ever tried to dye you hair to add some color to you?

I've thought about it for a long time, but I can't pick a colour, and I just haven't found the time to find a good stylist and get it done. Some of the stylists I talked to swore up and down it couldn't be done.

You should leave it. It's pretty cool as is.

I would never dye forever, but it would be kind of fun to do once just to see what happens.

I would never dye forever

well, at some point...

Didn't you hear? People with albinism are immortal.

This guy is a legend

I'm Will Smith?

WHAT? I don't want you to die even once!

Everyone dies at some point. The key is to live life to the fullest, and die with no regrets.

First of all: thank you for giving an AMA which is not about advertising!

How does the community look at you and for how much is it accepted en respected?

Oh but I am advertising! You just haven't figured out which product I'm peddling. Subliminal advertising at its finest!

The general community where I live respects me and treats me like they would anyone else. I feel completely normal here.

The albinism community is kinda indifferent about me. I don't get a lot of recognition for doing these AmAs or other contributions, but it's very cliquish if that makes sense.

i would understand if you wouldn't want to answer this, but what's the meanest thing anybody has ever called you?

Nothing incredibly mean. Someone in high school used to call me Snow White and while I played along with it, it was really offensive for some reason. I don't know, I just really hated it. But beyond that, just the typical things you'd expect.

That sounds lucky. I'm very pale with light blonde hair and I was even called "Powder" after that movie came out. God I hated that movie.

It happens, best thing to do is just ignore it.

You could adopt Andés Iniesta's ''El blanquito'' nickname. Sounds badass.

I could, but I'd rather just be Alex.

Does the carpet match the drapes?

Yes.

Well, frig, that's cool as shit.

I wish more people thought so, more ladies in particular.

What?! As a lady myself, I apologize. I think it's the coolest thing ever.

Really?

As a gay dude I too think it sounds cool as shit

Username checks out.

I'm being serious here, cause I am weirdly curious. I don't blame you if you don't answer.... but is your penis more pink or a different color than the rest of the body?

Why don't you come over and find out ;)

Directions unclear. Genitals are bleached white.

And now we match!

well I guess now we know what color Alex's penis is

Shit! That was supposed to be a secret!

Hey, I saw your past AMA! And this time I'm not late to the party. :D

If you could choose, would you rather have good vision, or a more "normal" appearance? Thanks!

That's a good question. Um... probably good vision. I mean appearance, we all age. I wouldn't be attractive in my 50's. Hell, I'm not attractive now. But good vision is always necessary, and usually remains pretty stable.

Excuse yourself. 10/10 would smash.

Also 10/10 would take you out to dinner, get to know you, hit it off well, meet your family, move in together, get married, adopt a few kids, grow old with you.

Well I'm currently single so...

Well, are you also gay? Judging by "would smash" and "adopt a few kids", /u/The_Limp_Lizards is a gay man

I mean, I can be.

Ever tried an artificial tan? How well did it work?

Never, though I'd like to try it at least once. And then dye my hair green. Maybe for Halloween.

.....like and oompa-loompa???

Exactly!

I'm sure you get some sideways glances, but do people you've encountered generally treat you differently?

I'm sure there may have been a few instances that I just can't remember right now. Generally, everyone I come across treats me the same as they would anyone else. To the point that on a day-to-day basis I feel normal.

How often have people confused you with an Albanian?

Only in these AmAs.

Do you have to take extra precautions if you'll be in direct sun for a while?

Absolutely. It depends on the location, weather, time of year, etc. But generally if I'm going to be out an about for say 30+ minutes sunscreen is a must.

What do you like to do for fun, since the sun is your enemy and you can't go outside ?

I can go outside, but I do prefer indoor activities. Lots of Reddit, YouTube, Netflix, etc. Concerts (indoors, of course), travel, and Minecraft.

What type of precautions do you have to take? Lots of sunscreen and heavy clothing I imagine? And, when those precautions fail...is it just a severe sunburn? Thanks for doing this.

Usually sunscreen applied very thoroughly works fine. It's just important remember to reapply and to not miss any spots like ears, nose, etc. Clothing like long sleeve shirts, hats, sunglasses, etc are also options, but of course not ideal in the summertime.

It is just a severe sunburn, severity depending on exposure. I've never had one so bad it blistered, but redness and peeling and pain aren't fun. There is no tanning, I just straight sunburn.

What's your favorite Minecraft server, or do you play singleplayer?

I have the PE version so as far as I'm aware I can only do single player.

Hi Alex! I could not help but notice OHSU did your gene sequence work. My question, do you live in Oregon and, if so, did the weather play a role in your selection of a place to call home?

I'm actually from California and live in Texas. The NIH coordinated (and paid for) the testing, though I'm not sure why they outsourced it to OHSU considering their own geneticists could do it.

live in Texas.

And I bet you enjoy our wonderful summer sun, right?

I've never experienced a Texas summer, I'm always in California.

When you wear your glasses, what is your vision at?

20/200.

Has your albinism ever caused any problems with school, teachers or students doing something or reacting in someway?

I'm sure students stare and some teachers are curious, but no real issues I can think of.

Because of my contrast issues, I have a hard time reading pencil writing, so I have to use a pen. Math teachers fucking hate that, but they don't really get a choice.

My maths teachers at school always wanted everyone to use pens. I think it was so they could see what mistakes people made. What a world.

I had an English professor who forced us to use pen because his vision wasn't good enough to read pencil. That was cool, too bad the remaining aspects of his class sucked.

Have you heard about the insane stuff going down in Tanzania and other parts of Africa regarding people with albinism? If not, please stay away from those areas where your condition can get you into trouble, because the crimes committed are truly horrific.

I have, and that's not keeping me away. A few of my friends with albinism have travelled to Tanzania as well. I certainly wouldn't go to the rural* areas and just hang out all day, but the situation isn't as dangerous as it sounds. Still horrific, but getting better.

Are your parents albino as well?

No.

(Far) relatives that you know about?

One cousin in Mexico, I don't remember her place in the family tree but she's on my mother's side.

Saludos estimado y gracias por el AMA, de que pais es tu familia/tu? cheers from Chile!!

México.

Is that why you're white?

Yes.

How are you today?

Excited, how are you?

Im good mate thanks for asking

Where are you from?

Growing up, were you able to play sports and do other outdoor activities that most children participate in?

I couldn't, but more because of vision. It's hard to play a sport where you have to track a moving object, what with the visual impairment and shitty depth perception and all. I did regular P.E. all throughout middle and high school, just not so much actual participation.

What are some of the challenges that come along with albinism that people wouldn't necessarily think of? I saw you mentioned visual impairment in another comment. I didn't even realize that could be a component of it.

Also, how do you manage those challenges in your day-to-day?

Albinism has two components, skin and vision. Though everyone is aware of how easily I can sunburn, very few know that albinism also affects vision.

Skin is easy, I just stay out of the sun. I obviously have to go outside, but walking 15 minutes to class won't do anything—sitting at the beach for a few hours will.

For vision I have a variety of tools I can use depending on the situation. Digital textbooks, magnifiers, reading glasses, monoculars, digital magnification apps, etc.

Can you post pics of your butthole and penis?

I mean, for the right price ;)

I'm EXTREMELY white, and in elementary through middle school people would ask if i was an albino or not. I'm definitely not, as i said i'm just really white. How do you react when people ask you?

I tell them that I am, and ask how they guessed or how they know about albinism.

What kind of music are you in to?

Pop, mainly. And Alternative.

Have you traveled much? If so what countries?

Not too much internationally. Mexico, Canada, Fiji, Australia. A little more domestically, but definitely not as much as some of my friends.

Fucking Erin and her summer backpacking through Europe.

Does your condition hinder ability to exercise in any way? Do you have a favorite sport to play/watch?

Not regular exercises like running. Provided I wear sunscreen when I'm outside.

I've never liked sports, they've just never been my thing, playing or watching. But I do watch the Super Bowl and World Cup and all the major events.

Since your vision is one of the things to talk about the most have you thought about going into optometry as a field?

I think you have to have 20/20 vision to be an optometrist/ophthalmologist—certainly correctable to 20/20. I was talking to mine about it and she wasn't 100% sure, but she remembers a lot of the exams requiring pretty good vision.

I saw your other AMA. what's the point of doing multiple ama's? Nothing seems to have changed. Like that 1 guy who keeps doing AMAs about traveling the world.

edit: also, this is a serious question. I'm not trying to make a jab at you for making multiple AMA's.

It is definitely a valid question. While I obviously can't account for how many people have seen this and not said anything, I've only had like three people ask about the fact that I've done AmAs previously. Everyone else is just a bunch of legit questions. So all the people who are asking me questions... have they already seen my previous AmAs and they're just asking again out of sheer boredom?

How many AMA's have you done?

Completed? 12 I think.

Are you a Brother Ali fan?

I've heard a few of his songs and they're okay. I don't have any but I do like his style and how much he enjoys it.

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About a 1/10

9/10 with rice.

Favorite pizza toppings?

I just stick with pepperoni.

Have you ever considered wearing a wig or using contacts?

Contacts no, I'd be terrified of pushing that tiny thing against my eye. But I'd definitely wear a wig if I could obtain one.

Best video game of all time?

I'm sure the people at r/gaming fight about that. I can't say for all time, but personally I'm fond of Minecraft and GTA.

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Only when everyone makes that comparison. I really need to buy a DS and the Pokemon games so I can catch all the shiny ones and be their master.

What's your favorite beer? Also, are there any longterm complications you could be facing besides myopia and obvious skin sensitivity?

I hate beer. Sorry to all the beer lovers out there, I just can't stand the taste.

Not beyond what I've already been born with. I'm still susceptible to cataracts and macular degeneration and all the age-related eye issues. And of course skin cancer if I'm not careful.

Are you really that sensitive to light? How does it feel like?

Skin wise, if it's very bright and hot outside, I can definitely feel it. One of the best descriptions I think was "I feel like I'm burning alive!" It's not like... not like exposure to hot water, but you can feel the heat.

Vision wise, I'm not very photosensitive, but it feels like someone flashing a flashlight into your eyes nonstop, except without the floaters.

[deleted]

Blue.

Thanks for this AMA, albino. Do you think Bernie Sanders has any chance of winning the democratic nomination over his corporate-financed competitor?

Would I get the most karma if I said yes?