I have albinism—AmA

How concerned are you that, at any moment, an African witch doctor might hack you to pieces and sell parts of your body because of their magical properties?

Living in America, I'd say about 2/10.

But when I eventually go to Tanzania, I'll be sure to keep my eyes peeled!

Because of your bad vision?

The whole witch doctors killing people with albinism thing is very much real, but only happens in certain African countries (namely Tanzania, rural Tanzania for that matter). They're actually hosting an albinism conference in Tanzania next month. And although they're providing security at the event, there's little risk in a capital city.

dude, do I need to go General Ackbar on your ass?? IT'S A TRAP!!! You will all be hacked to pieces!!!

EDIT : I can't believe I fuckin mixed the ranks! Not changing it though as a testament to my everlasting shame!

Isn't Disneyland just a people trap operated by a mouse?

bruh

r/showerthoughts

That totally would have made the front page

Someone else can take the karma, I'm not worthy.

Yeah... id wait for the conference to be held literally anywhere else.

Many of them are held everywhere else, they're just doing Tanzania for the first time.

I'm from Maine and have lived in Tanzania for almost ten years, including the rural areas. Hit me up whenever you are in TZ and I'll help you out with whatever I can.

I don't know, there's this guy from Chicago that offered to have a drink with me if I'm ever in. I'm going to Chicago next week and that motherfucker isn't responding to my PMs!

:P But seriously, thank you so much for offering. When I eventually go, I'll absolutely reach out to you.

Unless this is a trap. I should send a decoy first.

I'm ginger / pale; enough to be your decoy...

Good luck, we're all counting on you.

The eyes are the first thing they'll peel.

I thought it was the foreskin?

Do you ever feel like a rare, shiny pokemon?

All the time, it's awesome.

Random aside: I once dated a girl with albinism who was super into Pokemon.

Man, that sounds perfect. Why did that relationship end if you don't mind me asking?

Distance. And we didn't have a lot in common.

How the fuck do you not like Pokemon?

I played the shit out of Pokemon when I was a kid. I had a ton of cards, I would do battle on elementary school playgrounds, I had my own Pokeball, I had the movies, etc.

Believe it or not, there's more to a relationship than both people having albinism and liking Pokemon.

Not with that attitude! /s.

Good on you, mate, for being true to yourself.

She was great whilst it lasted, though!

Are there any other traits of Albinism most people don't know about?

Most everyone is familiar with the pale skin, white hair, and easy sunburns. But few people know that albinism also causes visual impairment. The degree varies, but it's definitely bad enough to prevent most people with albinism from driving, seeing the board in class (even when sitting in the front), etc.

I have an friend with Albinism that once described her vision as looking into the world as if you have a fishbowl full of water on your head.

I then offered to buy her a fishbowl to put on her head to see if it would reverse the symptoms.

HAHAHAHAH!!!!!! Glorious!

I wouldn't exactly describe it like that. Vision isn't necessarily distorted, just blurry. Like 240p v. 1080p.

So, basically, console vs Glorious PC.

Edit: I first wrote consolve. Then I corrected it, and wrote concove.

Which one is better, anyway?

So does watching a video in 720p look like 120p to you?

I can discern between 144p and 1080p, like I can tell there's a huge quality difference, but it only makes things so much more sharp.

Well duhh.. thats because 144p looks like 24p. and 1080p looks like 180p

r/theydidthemath

I like how humorous you are with this.

It's important to have a good time :)

Glasses don't help?

They make my vision slightly sharper, but definitely can't get me up to 20/20.

Oh ok, I had a friend who was basically blind, he could only see things if they were reeeeeeaaaly close. He could still use a computer but he had to put is face right next to the screen

Same here, though maybe not that close.

Laser eye correction?

LASIK only corrects myopia, hyperopia, and astigmatism. Our vision problems stem from lack of pigment, a malformed fovea, etc. Glasses, surgery, LASIK, nothing will fix that.

That sucks man.

You get used to it :P

Are you attracted to or would you consider dating a black girl? Genetically speaking, would your kids be a beautiful golden shade of beige?

I do have a black friend that I have my (terrible) eye on. Although being Hispanic and considering I would've been naturally dark-skinned, I don't think it would balance out like that :(

Must have been an interesting child birth.

"Honey... Why is the baby... White?"

Probably. Followed by a huge fight about cheating and demanding a DNA test (Maury, anyone?)

Relevant

is this your wife's first baby? Yes

"No this is her husband" Missed opportunity

Agreed.

I noticed that you're hispanic. Have you ever noticed any prejudice from your family because you don't look more like them?

Not at all. They actually make fun of me and tease me more because I don't like most Mexican foods, not because of my skin.

You should do an "I don't like Mexican food" AMA.

That's gotta be rarer.

I like Mexican food! Tacos and quesadillas and tamales and burritos are the shit! Especially authentic, either from a taco truck in California or homemade by my family. All we have here in Texas is Tex-Mex and it's utter dog shit compared to authentic Mexican.

But enchiladas, chilaquiles, birria, stuff like that I'm not fond of.

Do you live in a place with a large Hispanic population? I can't imagine how much you must get called güero if you do. I got that all the time when I lived in the Southwest, and I'm not even blonde

I used to, but it wasn't that common. Usually complete strangers in supermarkets and the like. Where I live now is much more mixed, typically white people though, so I blend right in.

Is your asshole naturally bleached ?

I don't know, I can't see it.

Want me to take a look?

Sure ;)

Post a picture, I've never seen an albino asshole.

http://i.imgur.com/etjgJ2D.jpg

Risky click of the day.

You know you wanted to!

Well that surpassed expectations...

Glad I could satisfy you :)

Get a hand mirror. We need to know.

Or you could just come and find out yourself ;)

Is it true that if I eat your flesh, I gain powers?

Heavens no! Everyone knows that you have to eat the pancreas to gain any powers.

What if I just nibble on your earlobe for a while, what crazy hijinks would that cause?

Don't couples do that to each other all the time?

Have you ever considered dying your hair or any other "modifications" as such?

I've wanted to dye my hair for a long time, but I can't pick a colour, and I can't get any solid information about whether or not the hair dye would stick or fade after a while.

I would also spray tan at least once for the hell of it, and I'm absolutely onboard with getting a colour tattoo (the colours would pop) but I just need to pick a design. All these things have been considerations, I'm just too much of a wimp to pull the trigger.

Yo homie, there are different kinds of hair dyes. Most would stay saturated for a while, and then slowly fade to a duller color. You would have to re-dye every so often to get the roots. You should check out r/fancyfollicles. They can answer any questions you have.

The plan was to dye my hair and then cut it really short in like a month when the roots grow in, but if the dye fades then I could just dye it and not worry about it. Go back to normal in a few weeks.

Yeah, there are definitely semi-permanent or temporary dyes that would just wash out over the course of several weeks. You should try it! You're a guy, so worst case scenario you could just get a buzz cut if it didn't work out.

But would they stick considering I have very little pigment in my hair?

Not all dyes work that way. Try Special Effects dye, I've read that dyes tend not to "stick" as well on albino hair, but that brand is EXTREMELY strong and non toxic as well. They do mostly bright colors that you see on "alternative" people, but they have great reds and black. The dye stays in for months normally, so it will likely be bold and stay in for you for at least several weeks. Lmk how it goes if you try it out! I used to swear by that brand.

How much does dying damage your hair?

If you do no upkeep, it could damage your hair a bit. But considering most of the damage done when doing funky colors is done from bleaching, a step you get to forgo, your damage would be VERY minimal and probably would correct itself through the use of a good conditioner in the shower.

Very comforting. I mean, eventually, you just stop caring about your hair and such, but I'd rather try to minimize the damage.

You should let reddit make all these decisions for you. You'll be like a Billboard for our dumb ideas!

"You're like a walking colouring book, it's glorious!"

Woah, that's awesome!! I never thought about doing something like that! You could be the most bad ass spy/villain ever by just changing your appearance constantly!

Good luck with picking out a color OP and feel free to post the after pics for us. :)

I never thought about that: I wonder how many problems I'd run into with a drastically changed appearance. I wouldn't match any of my ID pictures!

Just to be safe you could take a series of pics documenting the transformation you are currently using on your smart phone just in case it ever became an issue. "Sir...this ID looks nothing like you." "O'really. Well check out THIS!"

"That picture? That ID? That was the old me. I've transformed. This. This is my final form!"

You should get a white ink tattoo, those thinks are cool and it would be interesting to see how they look on your skin.

I didn't know that was a thing, but now I have to try it—for science.

What was the hardest thing you've ever been through in life?

I can't think of one specific event, but overall having to get by with crappy vision certainly hasn't been fun.

What is crappy vision? Or: how much do you see?

Not my example originally but...

So let's say we're watching a football game. Texas vs. Oklahoma, and we're watching it on your brand new 4K TV. You can see everything, the individual blades of grass on the field, the beads of sweat and pores on the player's faces. The stitching on the football, just everything.

Now let's go to the basement and get grandma's old tube TV from like the 80's and throw the game on that. Well first off your bros are making fun of you for having such a shitty TV. They can watch the game, but they can't see any individual details like they could with the 4K TV. No pores or beads of sweat, no blades of grass or football stitching. Can't see the tears on Oklahoma fans' faces.

That's what my vision is like. I can see the same things you can see, but not as defined. I can see a human and tell you they're a human, but I wouldn't be able to make out their facial expressions or eye colour. I could see a tree and tell you it's a tree, but I wouldn't see the lines on the bark or individual leaves. I can see a bus and tell you it's a bus, but I wouldn't be able to read any of the numbers on it.

Can't see the tears on Oklahoma fans' faces.

Fuckin got em

Rekt.

This is probably the best analogy to describe less than perfect vision I have ever seen.

All credit goes to Matt, it's his analogy.

Can your vision not be corrected with glasses or surgery?

It can to a degree. Sharper vision and more focused. But I can't get anywhere near 20/20 with just standard glasses.

Fuckin hook em

I was amazed that everyone was talking shit about how Texas sucks this year and the Longhorns are going to lose. 14 points in like the first five minutes.

If you had to choose, would you rather have perfect vision or pigmented skin? In other words, would you prefer to see "normal" or appear "normal?" Thanks for doing this!

Very unique question, and absolutely I would take the perfect vision. Standing out and easy sunburning are whatever, I can handle those easily. But crappy vision... man I'd swap in a heartbeat.

What do you think of albinism stereotypes in the media? Are they hurtful?

They're definitely annoying, especially because a lot of people take them as fact. Cue everyone asking why I don't have red eyes.

Um.. sorry for apparently asking a stupid question, but why don't you have red eyes?

It's a scatter effect. Same reason why the sky is blue.

I dont know what that means, but my old albino hamster had bright red eyes and looked cool...

Animals with albinism have red eyes, humans don't.

What's the best thing about being an albino?

Being incredibly unique :)

This comment made my day

These AmAs and the community support always make my day.

I love you

I love you too... maybe... why don't you have a seat and tell me more about yourself?

Who are you going to vote for in the next presidential election?

Would I get the most karma if I said Bernie Sanders?

Yes

Then Bernie Sanders it is!

We did it reddit!

First Ellen Pao resigned, and now this!

idk but if I upvote will you feel the Bern fo real? (the VT senator burn, not sunburn)

What does the bern feel like?

Like grassroots campaigns all over your body.

Does it tickle?

Yes, but from the inside. ( ͡° ͜ʖ ͡°)

Give it to me, baby, let me feel the bern.

How do you feel about gingers?

They're awesome people with awesome hair!

Thanks! I like your hair too.

I'd probably like your hair, too.

Careful, he doesn't actually have a soul...

Neither do I.

Why do you think The Marshall Mathers LP 2 wasn't as solid as some of your earlier work?

Because people found out I'm gay.

Thanks for posting OP! Just 2 questions...

Has this impacted you financially at all? (I noticed in your proof that it said no additional charge for testing your parents)

Where do you live/where are your parents from?

Not consistently. Things like glasses and monoculars are fairly expensive, but they're like once in a decade or so purchases. It's not a chronic condition like diabetes that requires constant equipment and constant maintenance. Visual aids are expensive, but one and done.

I live in Dallas, Texas. My parents are originally from Mexico.

How do you deal with the looks or comments you get from people?

Because of my low vision, I often can't tell if people are staring (my face is usually buried in my phone, anyway). So it just goes over my head.

Comments are few and far between, but they're overwhelmingly curious or positive. Things like asking if I have albinism, or most often just commenting on how much they like my hair. Negative comments are fairly rare, and I just ignore them.

I can't imagine what negative comments would be, any examples?

P.S. Nice hair.

Just your generic "hey albino!" or... remember when skittles put a really white lifeguard in their commercial once? Someone made a reference to that. Nothing really overly negative but... not exactly the nicest thing to say to someone, either.

P.S. Thanks :)

Hey Albino! hahaha that is so uninspired it is actually hilarious. Kinda like how I call other drivers by their license plate if they are from another province/state. "Nice turn signal Minnesota!!"

People who make fun of me are never usually original.

Reference: https://www.youtube.com/watch?v=OSFudQ_HOQI

HAHAHAHAHAHAH!!!!! Poor kid :P

Does it ever bother you to be referred to as "an albino" rather than "someone with albinism"?

Personally, no. But I know some people who are incredibly bothered by it.

If you had the option to be not-albino (you mentioned you were Hispanic) would you take that option or would you like to stay how you are?

At this point, I'd rather stay the way I am. I'm so used to it, I've been to so many amazing places and met so many amazing people. And I get to keep doing these AmAs.

You know it's funny. I've been here a few years already and you're the only person I remember.

[EDIT]

To be honest, you and the dude with a double dick.

Double dick dude will always be legendary. John Green also does awesome AmAs. Gordon Ramsay, that guy who's been to every country without flying. Lots of people are AmA famous. I can't really say I have a place yet, but I love it here.

Coming from someone with vitiligo, how do you cope with the sun? My skin burns so quickly where I am missing pigment!

I just try my best to stay out of it. Walk in the shade whenever you can, walk quickly, etc.

But when I'm going to be out for long periods of time, I just use sunscreen (applied very liberally). It's hard to gauge. Sometimes you end up applying sunscreen for nothing, other times you don't think you'll need it and burn.

If you don't mind me asking, what colour are your pubes?

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

How do you feel about my name being Albin?

I've never met anyone named Albin before. But people are getting more clever with names these days. Like Nevaeh, and then there are all those wacky spellings for common names.

Albin is a pretty common name in Sweden actually :)

I have to got o Sweden now, and meet all these Albins. Plus, cute girls.

Fun side story: At a conference years ago, a group of people with albinism were touring, when someone came across them and asked "Are you from Sweden?" That spawned the whole Swedish Bikini Team thing.

How do you deal with the sun?

I primarily just stay out of it. Obviously you can't really avoid sun exposure unless you're a vampire, but a six minute walk to Subway won't do much. It's only when I go to like a fair or the beach or a place where I'll be outside in direct sunlight for an hour or so that it becomes problematic.

And in those situations, SPF 100 sunscreen—applied religiously on a schedule.

What happens if you're out in the sun for an hour?

A sunburn. The longer I'm out, the worse it is. There is no tanning or other defensive measure. I just turn red, then burn, and then it hurts for the next few days :(

How often do you apply it in that case?

Not often actually, I prefer the stay out of the sun approach because it's free and easy.

Sunscreen application is like twice a year. It's so rare that my previous bottles expired while being nearly full.

Do people with albinism have a higher rate of skin cancer?

Have you ever read To Kill a Mockingbird? I'm thinking of Boo Radley.

I don't think any studies have been conducted to compare the skin cancer rates of people with albinism to the general population, but the risk is definitely higher.

I read it my junior year of high school and made the same connection/ Though maybe poor old Boo was just an introvert. Someone should write to the author and ask if Radley was meant to have albinism.

Hey dude! We all know kids can be little assholes. So my question is : when you were younger, did kids in your class knew you had albinism? Did they act any different towards you or they didn't give a shit?

I can't speak for whether or not they knew. They never said anything and I never asked. But overall, they were at least used to me. I grew up with my classmates, so when it came time to form cliques and for popularity to actually matter, I was already accepted and treated nicely because everyone already knew me.

I wasn't popular, not by a long shot, but I was far from a bullied social outcast.

Are you black ?

No.

Quite the opposite

Well I mean, I'd be naturally dark-skinned, but yeah due to the albinism definitely the opposite.

Do your parents know you're black?

No, and let's keep it that way.

What are you going as for Halloween?

Myself.

What's the biggest change you've had do deal with?

Since I was born with the condition, there really wasn't a transition period. But personally, moving away from home was difficult.

Did you ever have issues in school or in society as a whole?

In school definitely, not being able to see the board or participate too much. But socially, I've always been okay.

Would you rather fight 100 duck sized horses or 1 horse sized duck?

"1 horse-sized duck. The Cube Square Law means that the legs of a horse sized duck would be incredibly unstable. Easy fight."

— CGPGrey.

so as a ginger kid, I gotta ask, sunburns?

Not often, because I'm careful. But they do happen and they suck.

Would you rather stick with albinism or have gingerism?

Albinism, because why not?

Have you met anyone else with albinism?

Many many people, they're awesome.

Is it true you have no soul?

I sold it to the devil for a doughnut a long time ago.

How many sunburn jokes to you have to put up with?

Also, how many people think they are origional?

None, actually, and very few albinism jokes. Even I don't know any sunburn or albinism jokes. So if anyone comes up with them, they'd be very original.

So would you find sunburn jokes... apeeling?

Get out.

Why would they have Albino jokes? You've achieved the perfect shade of white. Ain't nothin' wrong with that.

White is right, afterall.

Because albino jokes are funny, at least to me.

Are your pubes white?

edit: being serious. most pubes are darker in color than the rest of the hair on the body, in my exp.

Yes.

Why is Yellowman the greatest Reggae musician of all time?

Because he smokes lots of weed?

Zungguzungguguzungguzeng

I mean, at least someone is original with song names.

On a scale of 1 to 10 what do you think of the movie Powder and why 10/10?

I've never actually seen it, so it'll have to be ?/10 for now.

On the topic of low vision: are your vision problems fully correctable with contacts or glasses? Or are those just partial measures? Or are the vision problems so unique that they can't be corrected at all?

My eye problems are mainly physical, and occurred on the womb. Glasses and other current correction methods help slightly, as they make vision sharper and more focused. But nothing short of an eye transplant could really make a dramatic improvement.

I have a question: since people with albinism have fewer pigments, do the sun rays affect you differently?

Yes, we sunburn a lot easier. Like, automatically. There is no tanning or other defenses. Exposure to UV rays for long enough will always result in a sunburn.

What's your favorite sports team?

Shout out to the Cowboys, who are actually doing good this year—or so I've heard.

I personally don't care much about sports, but you can't live in Texas and not care about football, it's like a religion here.

Are you a fan of Brother Ali? If not here you go

https://www.youtube.com/watch?v=cEwmywm6S7k

I've heard a few of his songs and they're okay. Though I'm still pissed about missing his concert last year.

Are you currently planning a trip to Africa?

Not at this point in time because I can't afford it, but someday I'd love to go.