I have albinism—AmA

Can you please get buff as shit and shave your head too look like that guy from Prometheus?

Would that help me get laid?

In certain circles, yes.

Tell me more about these circles.

I can think of several off the bat. For instance, do you have a thing for goth girls? 'Cause they'd eat that right up. Start dressing working out so you look like Rutger Hauer from Blade Runner and you'll be fighting them off in no time. Source: a girl who has some seriously odd female friends.

You should introduce me to these odd female friends :)

Just live in a midsize central coast CA town that for some reason has a disproportionate amount of gothy girls. Oh and go to and/or play rock shows a lot. That's how you meet 'em.

Thanks for the suggestions, will do!

Yeah, try being unnaturally good at guitar too.

Now you're just asking for too much.

They're kind of like squares but with round edges

Steve Jobs had such a hard on for round edges.

In most circles getting buff equates to getting laid more...

What about in squares?

No.

Would I at least look cool?

Yes

I'm tempted, but getting buff takes a lot of time!

Eh.

Then it's probably not worth it :P

I think it would make you more attractive. Just something needs to happen with that hair style though

I wonder why Donald Trump picked his hairstyle.

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

What happened to his ear?? :O

The albino angle isn't enough to get you laid?

I wish!

What genius chose San Diego as the location for a meeting of people with albinism?

An evil one.

No joke, Alaska in December would be better.

But the flights up there aren't cheap. And it's cold :(

Come to Vancouver in April! I don't think I've ever seen the sun shine in April here. =(

I went to Vancouver like two years ago, it was fucking amazing :)

So at what point in your life did you choose to be an albino?

One day in the second grade I was like... fuck it, let's do this.

EDIT: GOLD!! YES!! :)

Scrolling through and this is, by far, your funniest answer

Silly questions get silly answers :P

Im Albanian, is that the same thing?

Sure.

Can you grow a beard?

No :(

Its ok I still love you!

Yay!

That was a freaking adorable exchange.

Now we have to kiss, right?

Yes. You and /u/ScorchingBonzai have to kiss now, that's correct.

Do you uh, have a breath mint by chance?

Doesn't albinism do something for that?

I wish. Still gotta practice dental hygiene like the rest of you.

Is that related to your condition or just normal hormone shit?

Just normal genetics. Though, I don't consider it a curse.

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

Most people are unaware of the visual impairment, or just how severe it can be in some cases. Most people with albinism are considered legally blind or very close to being so.

What causes that?

It's a variety of things that are all rooted to lack of pigment in the eye during development. I'd have to give you a lecture on eye anatomy to cover it all, but it's a number of things wrong with our eyes that ultimately leads to such impaired vision.

How is your eyesight in particular?

20/400 uncorrected and 20/200 corrected. What that means is... let's say we're both looking at a squirrel sitting on a tree stump eating a walnut (or whatever the fuck they eat). I presume you have 20/20 vision, so you'd see it perfectly from 200 feet away. Meanwhile, I would have to be 20 feet away from the squirrel to see it at the same level of detail and focus as you could at 200 feet away.

What if it's like a rabbit or something

Then it would be eating a carrot, but everything else remains unchanged.

What if the rabbit was doing something else? Like attacking a medieval knight in a holy search for an ancient artifact?

Then the rabbit would die, and you'd have a dead rabbit on the stump, all other variables remain the same.

TIL what vision measurements mean

You learn something new every day :)

God, I'm 20/200 uncorrected and I can't see fucking shit with out any lenses. How do you do anything like that?

Monoculars. I can see enough detail to see where I'm going, but anything more defined like the board in class or the number on a bus and I need a monocular.

In that case - consider going for a Colonel Klink look

Haha, a monocular is different from a monocle. It's like a pair of bionoculars, but only one.

Interesting. I never knew that. Thanks!

You learn something new every day :)

Hey Alex, are you a member of NOAH? I work with a lot of low vision patients with albinism. They're a great resource. Also, any nystagmus or myopic degeneration?

I am. NOAH is actually hosting a conference for people with albinism right now in Pittsburgh. I couldn't make it this year, but I've been twice.

I do have nystagmus but no profound head tilt, certainly not bad enough for surgery. And I am myopic.

Well shit - I have albinism and I just moved to Pittsburgh last year. This explains why I kept thinking I was seeing people with albinism the past few days...

The conference is still ongoing, raid the hotel and join them.

I just looked at the NOAH website - I literally walked by that hotel for the first time yesterday, what the hell are the chances?

Sounds like it ends tomorrow - I'm almost tempted to wake up early, go downtown and crash the breakfast, though I'm not sure what I'd do once I got there.

It is kinda short, unfortunately, and it does end tomorrow by 11 a.m. but just drop by and say hello. I remember my first conference, walking into the lobby and seeing a sea of white heads. Magical.

How does it feel to be a shiny in a world full of zubats?

I'm sure the Pokemon Go players would love me! :P

Would you be okay with being involved in shamanistic rituals? If yes, how soon can you fly yourself/parts of yourself to South Africa?

That's something I'd participate in for fun, as part of the culture. But not if it would result in my death.

Anyway, right away if you're willing to pay travel expenses :)

Sure no killing, maiming works just fine. I'll have Nigerian royalty send you details about inheriting money for travel expenses.

Do you need my social and bank routing info, too?

That would is most helpful, yes.

867-53-09... actually, just PM me for both numbers.

Damn you should be a comedian fuck that had me rolling when I read the number

It's good staircase humour, I'm nowhere near as funny in real life.

Well, they do use all sorts of albino body parts, I suppose some of them could be harvested non lethally.

You can get as much as US$75,000 on the black market for a set of arms, legs, ears, and genitals.

I mean, I'll never need my genitals, so how much do those fetch?

All depends, I think they price by the inch.

God dammit :(

Are your nipples pink?

Yeah, kinda. Like a dark pink.

http://m.imgur.com/gallery/NOECI0s

Really? ;)

Have you experienced any ridicule or bullying because of your albinism? How do you feel about it personally, does it make you self-conscious at all?

Not much. The occasional rude comment here or there, but for the most part everyone accepted me. Though, I can tell you plenty of horror stories from people with albinism who weren't as lucky.

For all intents and purposes I feel normal. I'm not in denial, but it's not like "I look different" is actively in the back of my mind when I'm out and about with family or going somewhere new.

Honestly you don't even look much different, just really light hair.

I'm sure I'd blend in in Scandinavia.

If this wasn't an 'I'm albino AMA', I would never have guessed you had albinism.. Yes, I am from Scandinavia, you are more than welcome to come join us!

Isn't it really cold there, though?

Thats why you stay inside and play CSGO in scandinavia.

All winter long?

Yea and the winter goes 12month so...

Hm... I'll just sit this one out. You guys have fun.

Hello! I have four younger adopted siblings, all who have albinism. Two of which are up in Pittsburgh right now attending a conference for children with albinism. That being said, what can I as an older brother do to make life easier for them, while they're still children and beyond? My mom has done a wonderful job with them so far, but I'd like to contribute as well.

You should have joined them at the conference! There's so much stuff there for family :)

For now? Support. Help them if they need something. Dealing with bullying, reading small font, getting around, etc.

Have you ever considered using any method of coloring yourself to pass as non albino?

Not intentionally. I would do it once, for fun, but not for the sake of trying to blend in.

I'm a makeup artist and honestly this would be so freaking fun to do. I'd be so down.

I would love to have someone experiment, fun for both of us.

( ͡° ͜ʖ ͡°)

Giggity!

Gonna sound rude here, but, after reading through your AmA and finding out you were into men, and as someone who got picked on for being gay quite a lot growing up, I'm compelled to ask. Have you ever gotten that "You're pretty pale...must be because there's not much sun in the closet" line?

I'm not actually gay, I was kidding :P Sorry you didn't get it, but that's a really fucking clever line that I wish someone would use now.

I'm sorry you were picked on, though. I love the shift we've had towards LGBT in the last decade or two. Dealing with the prop 8 bullshit in California, I never thought I'd see nationwide gay marriage legalization.

Ah. Sorry if my assumption insulted ya.

Thanks for answering my question, at least. Now I just need to find a gay albino...where's the next convention for people with albinism?

It didn't, it's my fault for joking like that.

There's one happening right this second in Pittsburgh, Pennsylvania if you can make your way over there :)

No one's at fault for jokes. Jokes are why we're all here. On the internet. Jokes and porn, mostly.

Like I always (maybe a couple times a year) say: White or black or rainbow, only one color really matters. Green. Unfortunately, I have very little money. So, enjoy the convention for the both of us, yeah?

I'm actually not there, either :( I really wanted to go but flights from across the country... just wasn't happening. But I've attended two and they were splendid. Can't recall if anyone there was gay... actually there was one lesbian woman that I met. But I'm sure there are gay people with albinism, I'll help you find one. No better wingman than an albino wingman!

I had a friend in university who was gay and albino. He definitely existed. I don't know where he is now though.

We should find him, for science!

If you ever want kids, would you do genetics testing on the fetus? Would having the albinism genes matter to you?

Do you have any siblings or other family members with albinism?

It would probably be a joint decision between myself and my partner if she'd want to be tested or have the fetus tested in advance.

Having children with albinism is an interesting dilemma. On one hand, there really isn't anyone better suited to raise that child than another person with albinism. Only at that point can you truly understand what that child is going through. But at the same time, would you want that child to suffer and be bullied and go through the same bullshit you went through? Even with your support?

I have one cousin on my mother's side with albinism, I don't remember her place in the tree, but that's it.

I'm albino too and while my wife was pregnant I kept thinking to myself "I hope he isn't albino".

I remembered my childhood and being picked on constantly. I didn't want him to go through that too. He isnt btw.

I have 7 siblings and one brother and two sisters are albino.

It definitely seems like the younger generation of people with albinism have it a lot easier. We're usually accepted, well connected, and live in a society where unique is celebrated. Talk to anyone 40+ with albinism and they'll tell you horror stories abut bullying, beatings, shaming, etc. It's a different world, but I can understand your reluctance, I'd feel the same way. Congratulations, though.

Just FYI, the chances of having an albino child with an albino woman are theoretically only 1 in 4.

The chances of having a child with albinism if both parents have albinism is actually 100%, unless they have different types of albinism.

How does it feel on your skin if you go in the sun? I mean does the sun affect you? So does t feel like burning or uncomfortable?

If it's hot enough it can actually feel like you're burning alive. And if I spend enough time in the sun I will actually get sunburned. But I can go outside to walk to the store or to get lunch and I'm fine.

In Jamaica and Africa albino kids born to black peoples suffer discrimination and attacks, has this ever happened to you? Would you visit these countries?

Also, ever heard of Yellowman? an albino reggae singer!

Never, just curious comments and questions in public. I would absolutely visit those countries, my dream is to go to Tanzania.

I've heard of him through these AmAs but I don't think I've ever heard any of his stuff. Time to change that.

Start with Zungguzungguguzungguzeng, possibly the best named song in music 😀 thanks for answering! I also really want to go to Tanzania, climb Mount Kilimanjaro.

How do you even pronounce that? These reggae artists man.

Oh and going on safari :)

Do you ever feel discriminated against? For example, if you where applying for a job.

I've never applied for a salaried job though coordinators were very understanding when applying for volunteer positions. I own all my own equipment (including my own copy of ZoomText) so hopefully that will be a strength when applying in the future.

What would you say is the general public's biggest misconception about albinism?

I don't hear it too often anymore, but I'm sure there are plenty of people that still believe we have red eyes. I've been had people tell me that I didn't really have albinism because I didn't have red eyes!

I'm sure there are plenty of people that still believe we have red eyes.

Just to be clear, no albinos have red eyes, or some albinos have red eyes?

No one with albinism has red eyes, most have blue eyes. They can just appear red under certain lighting conditions.

Thanks for doing another thorough IAMA.

Thanks for stopping by :)

I actually thought it was odd that you have brown eyes! Not because I thought you'd have red, but I thought that all people with albinism had light blue eyes. Didn't know it was possible to have brown.

I have some pigment in my irides, which results in the blue/green yellow colour.

Do you prefer broccoli or cauliflower?

They're both so good, but I'm leaning toward cauliflower

Ah, cauliflower, the albino broccoli.

Made especially for us :)

How did your parents and family react when they realized you have albinism?

What's your line of work? Did your... condition (?) impact the choice?

I'm not sure, I never asked :P

I'm currently a student, and that's going well. Generally, people with albinism are unable to do jobs that require perfect vision (as in, it's a literal requirement, like fighter pilot) or a lot of time in sunlight. There are people with albinism who are doctors, lawyers, social workers, computer programmers, photographers, etc.

What are you studying? :)

Psychology :)

Would you rather be albino or black?

I'd rather have albinism.

RACIST!

RACIST! DISENFRANCHISEMENT! GLOBAL WARMING!!

What's your type?

OCA 4.

I mean as far as the women go

I prefer burly men with great abs.

You rang?

Can you build me a log cabin?

Sure thing!!

takes off flannel shirt to reveal rippling muscles

grabs axe and gets chopping

Flex those muscles baby! Make us a house!

Real men build their houses from scratch!

Muscle bears?

They're just so cuddly!

Have you ever come across another albino in public by chance?

Yes um... three? times. I think three or four times.

What was that like? Do you run up and high five or?

Kind of awkward in a way, we were both shy :P In one case, I didn't even know because she had ocular albinism. She introduced herself. But it's always nice. You hear about these small towns where there are like six people with albinism and they bump into each other at the grocery store from time to time. Shit, closest person with albinism to me that I know of is like an hour away.

How many souls do you steal on a day to day basis?

My quota is six but I usually average around nine.

What's the best insult you've received?

"It's (can't remember the name), the albino lifeguard!" Referencing the albino lifeguard in the Starburst commercials.

starburst comercial

I still can't believe they aired that.

Can your bones cure my friends AIDS?

Unfortunately, no.

Hey now, let's not rush to conclusions

Listen, if people found out my bones did cure AIDS, they'd take all my bones! I only have so many :(

Does your skin produce vitamin D when in the sun similar to folks with regular skin? As a red head, I know my skin does an extra good job producing vitamin D when compared to the average person.

Yes. Though it's theorized that a lot of people with albinism are vitamin D deficient because they try to avoid sunlight or bathe in sunscreen with every exposure. The amount of exposure needed to produce a daily dose is like 10 minutes.

Just curious if you would be interested in coming on my podcast to talk about this?

Sure!

Did you develop such a good sense of humor as a result of albinism? I hope that comes across as respectable because I mean with the utmost respect. This AMA is entertaining as shit and you're funny as hell. I use my sense of humor as a shield sometimes so I am just curious. Be well man!

It's staircase humour, I'm nowhere near as funny in real life. I just love using references and shooting shit with the community. AmAs where people just deadpan answer questions (or avoid the joking ones) suck.

have you been playing Pokemon go??¿

I have not, is it fun?

hell yeah it is

Which team are you a part of?

mystic ftw

So you just run around town finding and catching Pokemon? What is the gym for?

you capture it for your team and when you capture it you become the gym leader

I'll look into it once I get into a bigger city with more Pokestops.

are you moving soon?

No, I live in a major city but I'm visiting family in a small town for the summer. We do have Pokemon Go players here, but I imagine they would be more prevalent in a major city.

What are some of the positive things about being different than everyone else that have helped you in your life?

Being unique is pretty awesome. While conformity and popularity are so big in K - 12, individuality and being unique are celebrated in college. Getting to attend amazing conferences, participate in research, etc. There have been plenty of amazing experiences.

But in terms of something that has helped me? Going to college for free is pretty nice.

Can u tell me more about this "free college" thing and how I can get albunism

Sorry, you gotta be born with it. Maybe in your next life :)

So white paint doesn't work?

No, but you could try bleaching like Michael Jackson.

Do you look paler irl than in pictures? Because every time you post an AMA I'm shocked that I'm almost as pale as you! I'm pretty damn pale (there are a few redheads out there that are even paler, but not many), but it's weird that you look about my color in pictures.

I've gotten a bit of sun lately. Roll up my sleeve and you'll see pale! :P

Can you dye your hair? Or will it not take or somethings like that?

I've never tried, but the consensus seems to be that hair dye would stick just like it would for any other person.

What spf do you use?

100.

Do your body parts have magical powers?

I wish!

Have you or would you ever dye your hair/eyebrows to fit in more?

Not solely for the purposes of fitting in more, but I definitely would just to experiment.

Do you have magic like in the Movie "Powder"?

I wish!

What would you consider to be the most difficult thng about your albinism?

And is there anything that people assume is diffiult for you because of your albinism, that isn't as bad as people usually think?

Definitely the visual impairment.

A lot of people, rightfully, assume that sunburns are a huge deal. But in reality I just stay out of the sun or bathe in SPF 100. It's an issue with an easy remedy, compared to the other issues with albinism.

Is it hard being in the sun? As in, going outside?

Not for short periods of time. I can walk to the pharmacy or post office in about 30 mins rt and not have a problem. But if I plan to be outside for hours, like at a festival or hanging out with friends, then sunscreen is a must. I won't tan, I'll just straight burn.

So I can't just decide to be outside for a long time on the fly, I have to know in advance or I better have sunscreen. Or sometimes I'm outside longer than I expected, and sunburn :(

What are some preconceived notions of albinism that are incorrect, or not totally accurate?

Thanks for the AMA!

That we all have red eyes, it's simply not true.

Any issues with your eyes and/or vision?

Quite sever visual impairment.

Is it hard to keep your teeth white enough to not seem yellowed against your skin tone?

I never think about it, and I doubt many people do.

How long does it take you to burn when you are out in the sun? I am VERY pale and can not tan for life of me...I just burn,peel and go back to being super pale. I can not be in direct sunlight for more than about 15-20 minutes without sunscreen or I will burn. I assume you experience something similar?

I mean it depends on your definition of a sunburn. If it's when your skin is red, hot to the touch, hurts like hell, and eventually peels... about two hours or so, maybe a little more. But just some asymptotic redness? I never check, but it's definitely less.

I am curious if you burn quicker in different parts of the world. I believe you do at different times of the year so it would make sense. I live in Louisiana and I legit have to use sunscreen just to mow the lawn. You are right though...for me to get a real bad burn it does take at least an hour of exposure. I remember being a kid and going to the swimming pool. If I did not reapply my sunscreen in time I was in for some misery.

I've always been told that you burn faster the closer you are to the equator, which is kinda sad considering that the higher population density of people with albinism is in Panama :(

Two hours? Lucky! I burn in about 20 mins if it's really sunny.

Sunscreen FTW!

What is your favorite food?

Bacon cheeseburger (from Five Guys).

What SPF do you use?

100.

What FPS do you use?

1080p60, obviously.

Aside from skin color,does your condition cause any other difficulties,I.e. Skin cancer, ect ?

There is a much higher risk of skin cancer since I sunburn so easily.

Haven't you done a few of these? Is it all for the karma? Did you get albinism for the karma???

I have. Yes. Yes.

Does it affect your eyesight?

Yes.

Do you have any tattoos? Would getting one be any different than someone who has pigment (pigmentation?) in their skin?

I don't but I've always wanted one and I assume the process would be the same. Colours would definitely pop more, though.

You said you were legally blind, do you use a program to speak the text on reddit?

No, I just zoom in on the entire display (like display magnification in Windows). I can always pinch to zoom in Safari like you can on iOS. The rest is just getting semi-close to the screen.

When you go out in the sun, what spf sunscreen do you wear?

100.

Do you ever get jealous of people who tan really well?

Not really like jealous jealous, but I would love to have the same defense mechanism.

What's the hardest thing about being afraid of water? Do you ever get dehydrated? Do you bathe?

What's the hardest thing about being afraid of water?

Never getting to swim in the Mississippi River.

Do you ever get dehydrated?

No, I drink coffee.

Do you bathe?

Yes, in Coca-Cola

Would you consider taking part in a eugenics experiment?

That depends, do they offer a lollipop and a sticker when you're done?

Have you ever wanked over a picture of your own arse hole?

Is that a fetish?

I'll ask the questions around here albine boy

Yes sir.

[deleted]

It impairs it severely. So much so that I'm considered legally blind.

Have you listened to Hello Internet or Cortex yet?

You always seem to remember :P Was HI cancelled?

Do people ask you about it often? And also just a side not, from the nose up you kinda look like Ron Perlman

Rarely, maybe a handful of times the past few years. That's why I do AmAs, so people aren't shy about asking questions.

Yeah, I can kinda see it. I've always been told I look like Todd from Breaking Bad. Except I would have the balls to actually hit on Lydia.

What the fuck is up with the 40 some odd headshots, and why do you do an AMA every couple months? I swear I've seen like six or seven of these. This seems less like a weird self obsession at this point

I had them taken a while back and thought to include them randomly, why not?

They do seem to be popular, with the exception of times where someone famous does an AmA, then mine don't get any attention. But when they're noticed people ask questions, including you.

Do you enjoy not having a Soul? :D

In all seriousness - I am curious how your eyesight is effected and if it's a direct result of your ilness

Eh, I never really saw the point in having one. I much preferred the doughnut.

Very much so, like legally blind so.

Does it bother you when people don't use sunscreen?

Nah, if they want to tan let them tan.

Is your family black? Could a white person be albino too?

No.

Yes. That's why we think albinism is underdiagnosed in Nordic countries. A person with fair skin and blonde hair just looks normal over there.

Who would you vote for in the upcoming elections?

Would I get the most karma if I said Donald Trump?

Probably not

Would I get the most karma if I said Jill Stein?

Um....maybe?

Man, I miss the old days when I could just say Bernie Sanders and rake in all the karma.

I miss the days when I was still able to pretend he had a chance.

I miss Jeb Bush during the debates.