Hi Reddit!

My name is Alex and I have albinism. I've done several albinism AmAs in the past. Recently, I went to Sydney, Australia to attend the 5th national Albinism Fellowship of Australia conference. I'm back from Sydney and ready to answer your questions!!

Proof: http://www.flickr.com/photos/applealexc/8663664233/

More proof: http://www.flickr.com/photos/applealexc/10363492184/

Conference proof: http://www.flickr.com/photos/applealexc/10363487196/

More conference proof: http://www.flickr.com/photos/applealexc/10363398556/

Comments: 887 • Responses: 140  • Date: 

Sleal2545 karma

Im going to be honest. I clicked each of those pictures looking for one of an overview photo of like 200+ albinistic people.

AlbinoAlex164 karma

One was taken. We did take a giant group picture towards the end of the conference, but the conference photographer hasn't finished sorting and watermarking her pictures yet. I do have an extremely low resolution and crappy copy, but I don't have her permission to post it.

Smeed415 karma

Hopefully the photographer had red eye reduction turned on.

AlbinoAlex283 karma

She never used flash :)

thehazzanator91 karma

this made me smile

AlbinoAlex88 karma

Me too, a lot easier to smile when your eyes don't hurt after a photo :P

TheTallGentleman16 karma

Wait how come?

AlbinoAlex81 karma

A LOT of people with albinism are fairly photosensitive. So bright lights (like a flash) are not only annoying, they can be fairly painful.

Robertooshka19 karma

My eyes are super photosensitive and I have blue eyes. I can't imagine how much driving at night must hurt you.

AlbinoAlex37 karma

It's kinda funny because most people with albinism report that their night vision is better than their day vision (probably because there's no massive sun in the way). However, most people with albinism who manage a driver's license are forbidden from driving at night.

TheTallGentleman3 karma

Oh, I thought you meant that albinism means you didn't get pain from the flash

AlbinoAlex3 karma

Well personally, I don't experience pain from bright light, but a lot of people with albinism do.

nismith0835 karma

I think you might be the first person on reddit to actually give a shit about photo copyright laws. Kudos to you.

AlbinoAlex34 karma

I wish more people did.

boxbatter201 karma

Do you have any powers? Can you heal a deer if it is injured?

AlbinoAlex233 karma

I wish! I can solve a Rubik's Cube, if that counts.

EvTheSmev128 karma

Wow that's awesome! Where can I become albino?

AlbinoAlex372 karma

Sorry, you have to be born with it. We're pretty exclusive.

YOU CAN'T SIT WITH US!!!!

Dude-Im-Pasta71 karma

I'm Irish...can I join?

AlbinoAlex76 karma

The Albinism Fellowship of the UK & Ireland was made just for you :)

Dude-Im-Pasta24 karma

Yay! I'm not albino but I'll go anyway!

...And then can I sit with you?

AlbinoAlex46 karma

Only if you prove you are worthy.

Dude-Im-Pasta38 karma

Dude, I'm pasta. I make Italians orgasm at the very sight of me.

I think that qualifies as me being worthy.

AlbinoAlex31 karma

You must swear to teach us that skill.

NonSequiturEdit5 karma

That definitely counts.

AlbinoAlex11 karma

Yay!! :)

nahtacoder148 karma

My son has albinism. Anything you wish your parents would have done while you were younger?

AlbinoAlex214 karma

I think my parents did a great job considering their situation. They didn't have a single Internet resource (even to this day they don't know how to use a computer), they didn't have support groups, they didn't have pamphlets and guides, they didn't have anyone to relate to. They just had doctors telling them their son had albinism and was probably blind. And yet I had large print textbooks and CCTVs and my mother attended IEP meetings and everything went fine.

My advice to parents would be to get as many visual aids as possible. Magnifiers, CCTVs, large print, monoculars, etc. Every child has a preference, but having access to it all helps them cope and helps them become independent earlier.

sapolism71 karma

Your badge says you were a speaker. What did you talk about?

AlbinoAlex192 karma

I shared my personal story of being a pre-medical student and being a "person of color with albinism" (I'm Mexican-American).

iristhevirus69 karma

That has been my number one curiosity. What is it like to be a 'person of color' with albinism? I read all of those horrible stories about African albinos being slaughtered for their 'magical' properties. I can't even imagine. I realize your situation is very different, but do you face any stigma or cultural projections?

AlbinoAlex141 karma

It's pretty fun, actually. It's really great seeing Mexican people automatically assume I'm just another white guy, and then literally jumping out of their skins when I speak perfect fluent Spanish. And then they have a ton of questions.

CheezeCaek2149 karma

Man, you could -really- have a lot of fun with that.

Walk up to folks with a 'How to Speak Spanish' translation book, look confused, stammer out a word, look to the book and do the "ah!" as if you found what you were looking for, then break out the entire sentence in perfect, fluent Spanish.

Record Reaction.

AlbinoAlex42 karma

HAHAHAHHA!!!! I never thought of that before. I'll give it a shot!

SheepD0g42 karma

Send photo.

AlbinoAlex124 karma

No, Madonna.

etotheipith39 karma

HE'S ONE OF US

AlbinoAlex54 karma

I'm in! Yes!!!

Moooooooose4 karma

You are hilarious!

AlbinoAlex11 karma

Thank you.

send photo

Bypassomega16 karma

I lot of people I know from Guatemala refer to albinos as "hijos del sol"- is this a common term in Latin America, or something more regional? If it's an offensive term for people with albinism I apologize in advance- even though "child of the sun" is a pretty fucking badass name.

AlbinoAlex34 karma

I'm going to assume it's regional, I've never heard it used in Mexico. People with albinism in Panama are called children of the moon. Funny that we're children of the sun considering how easy we sunburn.

scubasue4 karma

FWIW, albinism is relatively common in (parts of) Fiji. There are several on the island of Ovalau, with a population of a few thousand; and I saw several more in the capital city of Suva. The word in Fijian is "rea."

AlbinoAlex3 karma

Thanks so much for sharing! They actually talked about albinism in Fiji during one of the sessions, but I missed it :(

Even funnier, I actually went to Fiji! I transited through Nadi before going to Sydney. Didn't see people with albinism, but I was only in the airport.

[deleted]2 karma

[deleted]

AlbinoAlex10 karma

Please keep it a secret :)

DUCK_TIE7 karma

Im guessing he knew who you were?

AlbinoAlex14 karma

He said he had guessed I wasn't American from the start. It must always be a secret. No one can know I'm actually Mexican.

[deleted]-1 karma

[deleted]

AlbinoAlex1 karma

They weren't hosting a confernece in America this year.

shirosuzume61 karma

I don't know if you have nystagmus or not, but I have taken care of a number of infants with albinism and nystagmus, and always wondered what the subjective experience of that is like. Can you comment on that. Thanks for doing the AmA!

AlbinoAlex87 karma

I do, and it's actually not bad. Although my eyes bounce all over the place, I still see straight ahead. I can't even feel my eyes moving around all the time. The great thing about nystagmus is that it tends to slow down as you get older :)

shirosuzume36 karma

That's fantastic! I'm glad to hear that it's not horribly distracting for you, and that it improves as you age. The brain is amazing and I figured that it adapted somehow, but never had the chance to ask anyone before. Thanks for the answer.

AlbinoAlex67 karma

No problem :) One factor, though: everyone with nystagmus has a null point or null zone, which is the point where vision is the clearest and eyes shake the least. For 50% of the people with nystagmus, that point is straight ahead. But for the rest, it's slightly off center. This results in a turned head posture which can get painful and cause other problems later in life. So it's important to recognize this and evaluate it as soon as possible, as there are surgeries to center the null point.

shirosuzume22 karma

I didn't know that, and now I have a follow-up question: what determines where the null point is, and how do you correct it?

AlbinoAlex30 karma

I'm pretty sure the null point location is pretty much just luck. I haven't read any research that suggests early intervention with glasses affects it (though ophthalmologists I've spoken to do recommend prescribing glasses as early as possible, before vision fully develops). It seems some are just born with it centered and some are not.

A misaligned null point is corrected with surgery to the eye muscles. I'm not entirely sure what they change.

blood_thunder15 karma

[deleted]

AlbinoAlex5 karma

Thank you for sharing, that's some pretty interesting stuff on nystagmus.

If you can, do contact NOAH or the AFA and inquire about speaking at one of our conferences. We're always looking for specialists who know about albinism, as most doctors have never even heard of it.

Diving_Squirrels1 karma

Hey, I have nystagmus and havn't really noticed this null zone, so I'm guessing its centered, but I'm also lazy eyed (I think it's called, one of my eyes always look to the side. I was operated when I was like 2 years old but Im not sure if it was because of that or the null zone. Anyways, where's your null zone? It must suck to not have it centered, and do you generally feel your eyes shaking? Because I never do, but that might be the brain just being used to it?

AlbinoAlex1 karma

The lazy eye is called strabismus, and is also common in albinism.

My null zone is straight ahead, thankfully. I was evaluated by an ophthalmologist at the National Eye Institute and he didn't notice a significant head tilt. I'm sure it does suck to have an off-center null point, though.

I never feel my eyes shaking, ever. You're not supposed to, are you? I don't think even normal people feel when their eyes move.

ErasmoGnome43 karma

Are there any side effects of albinism besides the obvious appearance difference? Do you get sunburned very easily?

AlbinoAlex81 karma

There is a severe visual impairment associated with albinism. Most people with the condition are considered "legally blind."

It depends on your definition of a sunburn. For me, it's not exactly instant, but about two hours of so of constant sun exposure WILL result in a painful sunburn. I can't tan like most people do.

Mexicancakesmuggler25 karma

Aww man, I don't have albinism, but I have such fare skin that I burn to a crisp without strong sunscreen, but the SPF that I need (idk if it has anything to do with the actual sun protectin factor) is so strong the actual sunscreen burns my skin. I can't win! Do you seem to have this problem too or am I just alone on this haha

AlbinoAlex61 karma

Are you sure that's it? That sounds like an allergic reaction to a component of the sunscreen (sunscreens have lots of chemicals). I'd consult a dermatologist. I use SPF 100 and it works fine. A little oily and I hate putting it on, but no burns in either scenario.

Mexicancakesmuggler10 karma

Ya SPF 100 is what I use too, it's not like burn as in big blisters or anything it just kind of leaves a rash and burning sensation on my face or on my under arm/ chest area.

Edit: It used to happen to my father aswell, but he said that as he got older it kinda just went away. Edit 2: I may also add that where I live there are not alot of beaches or really overly hot days either (Canada woo!) so mostly I wear it where I've been traveling to more hotter climates

AlbinoAlex32 karma

It might have something to do with traveling, too. When I went to Sydney, my hands and legs turned blue. They're fine now. The human body does weird things.

To be honest, you don't NEED SPF 100 just because you have fair skin. The maximum SPF ANYONE needs, including people with albinism, is SPF 30. SPFs get higher because people don't apply enough sunscreen. And the higher the SPF, the more powerful and plentiful the chemicals in the sunscreen are, which leads me to believe it's an allergic reaction. But again, consult a dermatologist.

Ruth_Gordon1 karma

Where do you get SPF 100? I don't have albinism, but I do have vitiligo. I have melanin, but my body is slowly destroying it. My hands and face are particularly affected. I can only find SPF 75. I start to get lightly burned at about 30 minutes...

AlbinoAlex3 karma

You don't need SPF 100. SPF 15 blocks 94% of UV rays and SPF 30 97%. SPF 30 is the highest anyone needs. The reason you're burning is you're not applying enough. Sunscreen should be applied 15 minutes before sun exposure, and to the point that it's a thin film on your skin.

A doctor gave me the golden rule: 1 ounce = 1 shot glass full = 1 adult.

Cabbage_Vendor39 karma

Do you ever consider dying your hair to avoid awkard/annoying confrontations?

AlbinoAlex38 karma

I have considered dying my hair many times, but never for that reason. I'll hopefully do it someday :)

lilafee30 karma

do it! Like... purple or something

AlbinoAlex24 karma

Everyone always recommends like brown or black so I can be "normal."

nagilfarswake63 karma

Overrated.

AlbinoAlex74 karma

Pigment is overrated :)

MiracleOwl32 karma

Why the hell would you do something like that?! You have access to hair colors that the vast majority of the billions of other, more pigmenty people on the planet either have to damage the shit out of their hair with bleaches to achieve or can't even get at all. What is this shit, "you could do things with your hair that are possible for very few people in the entire world, you should make it really boring instead."

Nah, man. REALLY LIGHT PURPLE. That would be awesome.

AlbinoAlex19 karma

I'll try it. I've always wanted to do like a light blue or light purple :)

Torgo_the_White1 karma

Wouldn't that just overemphasize the white skin?

AlbinoAlex9 karma

Probably, but that would be fun, too :P

ABillyGoat34 karma

So what's it like being Albanian?

AlbinoAlex64 karma

It sucks :( We don't get any of the cool American shows like jersey Shore.

snarftheman31 karma

How has dating been with albinism?

AlbinoAlex89 karma

Pretty difficult—a vast majority of my relationships have been online and long-distance. But it's just a fact of life, and you don't need love to be happy.

Clu_is_a_moron192 karma

You just gotta own it.

"Sup, the name's Alex and the carpets match the drapes. Can I get you a white russian?"

"Is it hot in here or is it just you? Or is it the fact that I am overly sensitive to all types of radiation?"

"When I saw you, I was like a deer in headlights. Might just be an eye pigmentation thing, though."

"Are you sure you don't have a little albino in you? Would you like to?"

AlbinoAlex52 karma

Yes!! I've always been searching for the right pick-up lines, and I've finally found them!!

If I wasn't too lazy to go get my credit card, I'd get you some reddit gold!

journeymanSF26 karma

aww man, everyone needs love dude. You're a good looking guy, you have a sweet ice breaker too. I'm lonely too, but there is hope for all of us.

AlbinoAlex40 karma

Maybe someday I'll find it. Maybe when I'm a rich doctor. But it's not something I get caught up over.

Flumper30 karma

What sick minded bastard hosts a conference on albinism in Australia?!

AlbinoAlex14 karma

One that knows Australians with albinism won't pay the heaps of money it takes to fly to America or the UK for their conferences.

We stayed in the conference hotel until like 6:30, though :)

Flumper7 karma

Ha, yeah, I figured there was a good reason. I just thought it was funny that it was hosted in such a sunny country. :p

AlbinoAlex8 karma

It happens. One of the NOAH conferences was hosted in Vegas.... in July....

korainato26 karma

Do you have red eyes? I can't tell from the photo. Also I cannot understand how you feel for being albino but I just wanted to tell you good luck for the future :)

AlbinoAlex60 karma

I don't. Most people with albinism have blue eyes.

Mine are this weird mix of blue, green, and yellow. Some have described them as hazel. Here's a picture: http://www.flickr.com/photos/applealexc/8664834598/

Thank you :)

zergcupcakes36 karma

That is quite a lovely colour.

AlbinoAlex7 karma

Thank you :)

sparkle-derp8 karma

That's such a cool color!

AlbinoAlex7 karma

Thank you :)

JayKayAu4 karma

In that picture, I can't see your eyelashes... Do you not have eyelashes, or are they just really fine/transparent?

AlbinoAlex8 karma

They're pulled up, the photographer moved them out of the way for the picture. The slight hint of blue in the corner is her gloved finger holding my eyelid up.

Dayson_james1126 karma

did the conference pale in comparison to other conferences?

AlbinoAlex21 karma

It didn't. Other conferences had many more pale people.

Phendur24 karma

[deleted]

AlbinoAlex78 karma

It depends where I am, but probably "What's your name?" I actually get very very few questions about albinism, even from complete strangers.

moongoon7 karma

aw man.. you're lucky in that regard! I have an accent and as soon as I say anything I get asked where I'm from. I've been here 11 years, and being asked where you're from EVERY SINGLE DAY gets really old, I can tell you.

AlbinoAlex17 karma

I have a Midwestern like accent, despite being Mexican, so everyone just assumes I'm American.

wetasaneagle6 karma

So where are you from?

AlbinoAlex7 karma

California.

wetasaneagle7 karma

Huh! I'm in Portland and people always ask where I'm from because of my accent. I'm pretty convinced that I just enunciate certain words in an odd way. Where in California are you?

AlbinoAlex4 karma

Central. It's really fun because I'm Mexican, but I don't have the slightest hint of a Mexican accent unless I speak Spanish, so no one ever knows :)

Jason110823 karma

Sorry if this question seems ill informed but what goes on at the albinism fellowship of Australia?

AlbinoAlex26 karma

Well the organization itself is completely run by volunteers and provides support, connections, information to new parents, etc. They also publish a newsletter and host various events—including a biennial conference.

The conference itself is a three-day event where speakers from all different aspects of albinism speak. Geneticists, ophthalmologists, researchers, dermatologists, occupational therapists, people with albinism, parents, teachers, etc. And, of course, there's plenty of time to hang out and meet other people with albinism.

ice_cream_day8 karma

Are you guys trying to take over the world?

AlbinoAlex37 karma

We are indeed, but our numbers are a little small right now :(

PuntableMarmot20 karma

What are the odds that any of your biological children will also have albinism if your partner does not? If they do also have albinism?

AlbinoAlex52 karma

If I have kids with someone else who has albinism, the odds are 100% (Yes, every single child) the child will have albinism. However, if that person has a different type of albinism than mine, then none of the kids will have albinism, but they'd be carriers for both types.

If I have kids with someone who doesn't have albinism, the odds are 50% if they carry the gene for albinism, and 0% if they don't.

emptyvoices32 karma

Very interesting that 2 people with different types could not result in any albinism.

AlbinoAlex23 karma

It is. I thought albinism was just albinism, but it gets more complicated than that.

PuntableMarmot16 karma

Neat! Well...genetically neat. Oh crap, is it rude to say neat? :(

AlbinoAlex16 karma

Not at all, even I'm fascinated by it all :)

PieAndLattes16 karma

I have a student in my class who has albinism (I am a grade 3 teacher). Any tips on how to make her classroom life a bit easier? She has a CCTV and magnifiers and stuff already.

AlbinoAlex26 karma

Do you put anything on the board? If so, does she use a monocular or get printed copies of the material?

First off, never forget about her and her needs. It's hard, I know. Teachers have A LOT to juggle and so that student with special needs may slip your mind. But please try your best and occasionally ask her if she needs anything or is doing okay. Most people with albinism are NOT advocates for their needs, myself included. I don't know why. Maybe we just don't like the attention. Maybe we don't want to bother our teacher. But I NEVER said a word the many times my teacher forgot to print out notes for me. So ask.

PieAndLattes15 karma

Thank you so much for answering, that was very helpful!

I already do give her blown-up copies of (most) things but I will definitely make the time to ask her if she ever needs anything! Unfortunately, it is hard with a class of thirty kids... :) Thanks again!

AlbinoAlex7 karma

You're welcome :) Best of luck, PM me if you have any questions!

BossColo15 karma

I have vitiligo, and was wondering if I could join your club. If I can only go to half of them, that'd be cool.

Do you see people like us as posers?

Ruth_Gordon14 karma

I have vitiligo, too. I was wondering if albinos would look at us and be all hipster-like--"we didn't have pigment before you even knew what pigment was."

AlbinoAlex5 karma

I highly doubt it.

AlbinoAlex7 karma

NOAH is the National Organization for Albinism and Hypopigmentation. I would think vitiligo would fall under Hypopigmentation, but I've never seen someone with it at conferences. But you're more than welcome to contact the organization.

I've always been fascinated with vitiligo, and would gladly welcome you to join us. We were born without pigment, you lost it, there's no difference there.

Einchy16 karma

Mexican with early vitiligo. Hold me, brother from another pigment problem.

AlbinoAlex6 karma

Bros unite!

toxlab14 karma

Have you ever seen the Venture Bros cartoon?

It has a secondary character with albinism who is sometimes the butt of jokes, but mostly because of his dated pop culture references and other shenanigans.

Albinos are traditionally shown as killers and sadists in film and television. It's a convenient character hook that equates a genetic appearance condition with evil and malfeasance.

Were there ever any fictional albinos that you could identify with? Any media uses that stand out to you?

AlbinoAlex9 karma

I've never seen an episode of the show, but I always see promos for it, and wondered about the big guy wearing black with the yellow hair. That's not him, is it?

Although people with albinism being portrayed as evil is happening more and more, I've never actually seen a film with a person with albinism in it. My first exposure to albinism in the media or film was an ABC News 20/20 special on it, and I loved it :)

toxlab7 karma

The link has pictures of Pete White. The big hunky guy with the blonde mullet is Brock Sampson, and he is a stone cold pimp.

Here's a list of pop culture albinos from albinism.org. The characters are wildly negative.

I'm glad to learn that there was no negative cultural impact for you.

AlbinoAlex11 karma

Personally, I prefer Walter White, but Peter White seems cool, too!

I just wish there was a balance between good and bad people with albinism. Why can't Hollywood make a film about an albino superhero?

toxlab9 karma

There is Powder, but the character is portrayed as otherworldy and alien.

Sorry to hijack your AMA with my rambling.

AlbinoAlex5 karma

Why did the character in Powder have albinism? Someone told me it was because his mother was struck by lightning.

toxlab2 karma

That is the device used in the movie to explain his appearance and powers. The wiki doesn't really have any further information, and I'm sure that's because there wasn't any development for the character outside of that.

AlbinoAlex8 karma

I want super powers, too! Can I still get them if I'm struck by lightning, even if I'm no longer in utero?

toxlab4 karma

Only one way to find out, my friend.

Wait until my radioactive spider experiments pan out, and we can team up.

AlbinoAlex9 karma

PM me when it's time!

JayKayAu1 karma

www.imdb.com/title/tt0351461/

This was a cool movie, very slow and melancholy.

spoonerwilkins1 karma

And the whole movie is on youtube, been looking for it for ages:)

AlbinoAlex1 karma

Seriously??? Alright, I'll try to find the time to watch it soon :)

jacobskul14 karma

[deleted]

AlbinoAlex24 karma

Yes, the carpet matches the drapes.

impid12 karma

not to say having albinism is a bad thing but have you ever heard of any potential cures or anything? maybe some way for your body to magically produce pigment again?! sorry I am not biologically inclined!

AlbinoAlex24 karma

There's an upcoming clinical trial for a drug called nitisinone. In a nutshell, nitisinone stops the body's breakdown of tyrosine. In laboratory mice, it increased both iris and coat pigmentation. Although we're not sure if the same effect would be seen in humans.

impid8 karma

oh cool! is it something you would consider?

AlbinoAlex30 karma

If I qualify (it's only open to those having a specific type of albinism) then absolutely! Less for the whole cure aspect, more for just seeing if it works or not (I love clinical research). The only thing that worries me is the safety of it—nitisinone has never ever been given to people with albinism before, so we're not sure what exactly will happen.

impid16 karma

I understand. I wish you luck, buddy!

be good

AlbinoAlex7 karma

Thank you :)

keenedge4225 karma

nitisinone has never ever been given to people with albinism before, so we're not sure what exactly will happen.

Soooo... possible superhero origin story in the making?

AlbinoAlex13 karma

Or disruption of neurotransmitters and liver issues. Could go either way.

cats_pal1 karma

Thats interesting. Nitisinone is already used to treat tyrosinemia (accumulation of tyrosine due a faulty enzyme); however, my understanding is that it causes an error in the bilirubin pathway, which would actually make you yellow.

AlbinoAlex1 karma

Scientists doubt it would actually increase skin and hair pigmentation in humans, but we don't know. We don't know if any resulting pigment would be blotchy or all over the body.

Fun fact: birth control medicine gives you pigment, too!

Ozercc10 karma

If you hold a flashlight against your skin does the light spread out far?

AlbinoAlex28 karma

My entire body lights up, it's cool!

But of course, no one with albinism owns a flashlight. We all glow in the dark :)

hoek20009 karma

Did you ever know any other people in real life with albinism before going to one of these conferences? Also, don't know if anyone would even know the answer to this, but are there certain parts of the world or ethnic backgrounds where albinism is more common? Or is it all pretty uniform?

AlbinoAlex8 karma

Oh yeah! I met a few when I was growing up, and I've been to an albinism conference previously (this was my second).

Albinism is most common in the San Bias region of Panama, and I think Uganda has a pretty high prevalence, too. The global occurrence is one in every 20,000.

gaytonyxx8 karma

Is there anything AWESOME about being albino?!

AlbinoAlex26 karma

I'm pretty unique :)

nostalgic-at-night8 karma

Not a question, but I think people with albinism look so beautiful!

AlbinoAlex5 karma

Me too :)

sparkle-derp8 karma

Does anyone in your family have albinism?

PS, not related to your AMA, but I love your smile! You look so happy in the last conference picture.

AlbinoAlex9 karma

Only my great grandfather did. And a cousin who lives in Mexico.

Thank you :) It definitely was an amazing experience.

_FutureScientist7 karma

What was it like growing up with albinism?

How would you handle people staring at you or making comments about your appearance in public?

I don't know how to say this without sounding weird, but I find albino men and women physically attractive. Do you hear this often?

AlbinoAlex15 karma

It wasn't that bad. The teasing was minimal and everyone got pretty used to me.

The fun part about being blind is I never notice people staring, ever. I sometimes take walks with friends and they always say "Dude, everyone stares at you!" I never notice :)

I don't hear it often for men—it would be heaven if every girl had that mindset. But I sometimes hear people say that they find women with albinism extremely attractive, and well so do I :P

RageQuilter7 karma

[deleted]

AlbinoAlex11 karma

Although there is an occasional joke or pun, the majority of the keynotes are professional. The post-keynote get togethers are always loads of fun, though :) I think the best part was when one of the attendees was hanging around bushy areas where people were having sex, but being blind he couldn't see what they were doing.

sucksatprogramming6 karma

Do people with certain types of albinism scoff at other people with "lesser" types?

I know with certain disabilities (not saying albinism is a disability), there is rampant elitism when it comes to what ones disability is.

AlbinoAlex6 karma

Not that I'm aware of.

mrr0ng5 karma

How much does being an evil henchman pay? Did you attend a school to learn how to be a bad guy, or does it come naturally?

AlbinoAlex22 karma

Depends who I'm working for, but usually $6.66 an hour. Took a lot of saving up to go to Australia. Being evil is part of the albinism gene, so it's natural :)

Cadvin8 karma

But that's under minimum wage! How to they get away with-

Oh, yeah. Evil.

AlbinoAlex9 karma

I sometimes get bonuses, though! Depends how evil I've been that month.

monobarreller3 karma

Actually I was curious to know, given that albino's are typically portrayed as villainous in films and TV, does that bother you at all? To me it seems that it might be annoying, however it is such a provocative trait I like the fact that it tends to give one-dimensional characters a little more depth.

AlbinoAlex3 karma

The albinism community has a very big problem with it. Personally, I wish things were different, but it's not a big deal.

Xanimal132 karma

You've got to expand your horizons! You'll never make much money at $6.66 an hour, shoot for at least $666/hr!

AlbinoAlex3 karma

Only the most evil albinos get that, the ones in the movies.

It's hard out here for an evil albino!

b_for_badger5 karma

Does the conference ever break out into white power chants?

AlbinoAlex13 karma

Nope. I'll try to start one next conference.

nabab4 karma

What are the differences between different types of albinism? Can you tell what type someone has when you see them?

AlbinoAlex4 karma

The only difference is the gene that causes the albinism. You can't tell by looking a someone because someone with OCA 1B can look like someone with OCA 2 can look like someone with OCA 4. Your type is solely determined by a DNA test.

n00bz0rz4 karma

How do you cope with your condition while living in what can only be described as the world's largest oven?

AlbinoAlex4 karma

Well I don't live in Australia, I live in the United States, so the UV index is a lot lower. But I just stay out of the sun as much as I can.

RMELT4 karma

What's your favorite joke about albinism?

AlbinoAlex25 karma

An albino walks into a bar. He didn't see it coming.

xereo3 karma

How does it affect your vision?

AlbinoAlex8 karma

My uncorrected visual acuity is 20/400, meaning that something that someone with 20/20 vision can see perfectly fine from 400 feet away, I have to be 20 feet away to see. I'm considered "legally blind."

Thereptilia3 karma

Would LASIK eye surgery do anything to help?

AlbinoAlex7 karma

No :( LASIK only affects the cornea, the eye issues in albinism are caused by issues with the retina and optic nerves.

PresentedIn4D3 karma

Is there a sort of discriminatory relationship among people and those with albinism? I've never even considered it; I'd figure someone with albinism would function just as well as anyone else, for lack of a better statement. ie was it the subject of intense bullying, etc?

AlbinoAlex3 karma

Beyond the visual impairment, most people with albinism do function just like everyone else. We eat the same, go to the same colleges, and often take almost all the same jobs (sometimes with adaptations). The only bullying happens in childhood and sometimes into high school. As an adult, the most you'll get is stares and the occasional rude comment.

BMikasa2 karma

So did you hit up Carrisa Fowler?

AlbinoAlex2 karma

I did, and then ran the other way.

BMikasa1 karma

Albino not your type or what?

AlbinoAlex1 karma

Her personality wasn't my type.

taylorcraig6342 karma

What do you guys do at these conferences? Like what's the point? To fight discrimination?

AlbinoAlex3 karma

On top of just hanging out, we listen to lectures. People from all sorts of different fields relating to albinism come and speak about all sorts of topics. Geneticists, ophthalmologists, dermatologists, occupational therapists, O&M instructors, people with albinism, parents, teachers, etc.

PaulaNancyMillstoneJ1 karma

Did you learn new things at the conference or new strategies? That wording is bad, but I'm trying to ask if you learned or examined other attendees manners and ways of thinking about some of the challenges.

AlbinoAlex2 karma

Because I've attended a conference like this before, the only thing I really learned is that there are three new types of albinism.

Ruth_Gordon4 karma

How many types of albinism are there--and does a type of albinism affect your appearance or is it categorized by particular organs that are affected, or what?

AlbinoAlex3 karma

There are currently 7 types of OCA, the type doesn't really matter, as they all have varying levels of pigment.

BitchNowYouKnow1 karma

Dude how many AMAs have you done so far? As soon as I saw the topic was about albinism, I KNEW it was you. I'm starting to wonder if you are the only world in with albinism and everyone else is faking it.

AlbinoAlex1 karma

This is my third albinism AmA. I tend to do them three months apart.

I've seen other albinism AmAs, some more successful than others. This one actually isn't doing nearly as well as the rest, so maybe I should space them out more. Reddit is pretty unknown. I mean, it's super popular and everything—but it's not like Facebook and Instagram and Vine. A lot of my friends have no clue what Reddit is. With that regard, there probably aren't many people with albinism here. And probably not many with the guts to do an AmA. It's time consuming, and people aren't always the nicest. You also get asked if you sunburn easily a few million times.

thebluecrab1 karma

Do you have any albino jokes?

AlbinoAlex4 karma

An albino walks into a bar, he didn't see it coming.

CaptClarenceOveur1 karma

How do you feel about Albinos in movies? Most of the time they are either specialty criminals or a freak of nature with super power.

I know little poeple get ornery about the way they get portrayed in films.

I wonder what your thoughts are about it?

AlbinoAlex1 karma

The "evil albino" is a more and more common trend in films unfortunately. The albinism community as a whole HATES it and constantly condemns it.

I personally don't care. I mean, it would be nice if there were also like movies with an albino superhero or documentaries on albinism or just like a balance of good and bad. But you can't really change what Hollywood does. And I can always do awareness stuff, like this AmA.

Hamlet77681 karma

What do people talk about at an albinism conference?

AlbinoAlex2 karma

Issues relating to albinism. Vision, skin care, guide dogs, genetics, daily life, sports, etc.

JustinDL151 karma

Have you tried having any surgeries to fix the visual impairment?

AlbinoAlex1 karma

There are no surgeries to improve visual acuity in people with albinism.

Holocaust__Denier1 karma

I mean absolutely no offence, because I have done it just for fashions myself, but is it common within the Albinese to color your hair so it doesn't look like a colonial wig?

AlbinoAlex1 karma

As far as I can tell, not many people with albinism dye their hair, but plenty do, and it usually ends up looking really nice.

TheotheTheo1 karma

Saw your last thread, sad you chopped down the 'fro. That thing was epic! Cheers!

AlbinoAlex2 karma

I know, I was so sad about it :( But it'll be back soon!

FubbaYouCubba1 karma

Has albinism affected your social life and how people interact with you? Did they treat you differently after you explained what you had?

AlbinoAlex2 karma

Not much, other than not really fitting in. But all in all, most people are really friendly, even if I never explain what I have. I'm lucky to live in a place where everyone just kind of accepts everyone.

buCk-1 karma

Did the conference go allwhite?

AlbinoAlex2 karma

Only 1/3 of the attendees had albinism, so it was more of a mix.

MarkerBarker781 karma

What kind of problems would a person with albinism have, socially and for your health?

AlbinoAlex1 karma

Socially: ignorance, not fitting in, depends on where you live mainly.

Health: visual impairment, higher risk of skin cancer.

Behind_You_Sir1 karma

If so, how does your condition affect your daily life?

AlbinoAlex2 karma

Other than not being able to drive, it doesn't really. I do have to magnify my computer screen and use a monocular and such, but I've adjusted to that.

RedPanther11 karma

THERE ARE DOZENS OF US!!!!! DOZENSSSS!!!!!

*I'm sorry, I had to. I'll go to the bad place now.

AlbinoAlex2 karma

The conference only had 76 people with albinism, so you re technically not wrong :P

RedPanther11 karma

I'm glad you have a sense of humor. I'm sorry, I'm drunk and doing inappropriate things on the internet at the moment. I'll give you an upvote. Yay for imaginary internet points.

AlbinoAlex1 karma

I thought that people drunk text?? Drunk people get on Reddit, too??

FatHitman1 karma

You should of had the conference outside in the midday sun!

AlbinoAlex1 karma

They do. There was one being hosted at the exact same time in England and there are two next year in the United States. Basically, they're hosted in the States one year and abroad the next year. Rinse and repeat.

Hobbs541 karma

I remember we had a brother and sister arrive in high school (class of 76) who had albinism. I think they were twins but I didn't interact much with them so I don't know for sure. Mostly I remember that she was one of the most beautiful people I have ever seen walk the earth and they both slipped in with the most popular groups. I had forgotten all about them until the second Hellboy movie came out and then I remembered them except he was not as attractive as the actor but she looked much better in real life.

AlbinoAlex2 karma

I'm really surprised they managed to get into the popular group. Albeit not social outcasts, lots of people with albinism say they have trouble fitting in. I had some friends, and pretty much everyone knew who I was, but I was by no means popular.

Blastro4250 karma

Where have your people been and why are they headed for the Wall? Just kidding.

My only question, do you like Game of Thrones?

AlbinoAlex6 karma

Well we hide during the day, we hang out with the vampires. We're going there because we heard The Wall provides shade.

I've never seen Game of Thrones or read the books :( I know, I know, but I hear it's amazing!

Agent47770 karma

Are you all-white?

AlbinoAlex1 karma

Yes, except my eyes.

bookishboy0 karma

I manufacture and sell traditional African witch doctor herbal remedies, how do I get invited to your next conference?

AlbinoAlex2 karma

You just show up. But be warned, you have to tell them where you're from when you register.

waterdevil190 karma

Was it anything like the Ginger Conference on South Park? Should we be worried?

AlbinoAlex1 karma

Kind of, except we're not going to take over the world or whatever the gingers were going to do.

GDsucks-1 karma

The karma-whoring through your disease seems to be working out for ya... three times in a row! I tried making an AMA about my cancer but it seems cancer is too used already so it doesn't really work. Don't let that happen to albinism, let other albino folks join the party too!

AlbinoAlex1 karma

What is Reddit karma? I don't get it.

Emderp-1 karma

Do you feel that there's a lot of pressure on people with albinism to become rappers?

AlbinoAlex4 karma

No, but I'd like to be a rapper. I want to be Eminem Dos: The Next, Whiter Slim Shady

Am I too white to wear "bling"?

AlbinoAlex2 karma

But he's not wearing bling :(

ReallifeTonySTark-5 karma

With such a small percentage of non albino"s being never nudes. What percent do you think would be an accurate percentage of people with albinism that are never nudes as well?

Edit:?

AlbinoAlex6 karma

Yeah, I don't understand your question, either :P

whasupjohn4 karma

Alex, what did we just read?

AlbinoAlex3 karma

I don't know, someone translate!

sparkle-derp2 karma

I think he's asking you if you're afraid of being naked.

AlbinoAlex3 karma

I'm not. PALE PRIDE!!!!

Nirvarna-8 karma

AN ALBINO

AlbinoAlex4 karma

Mhmm. In the (very pale) flesh.