I have albinism—AmA

What is the most common misconception about albinism that you've seen or heard about first hand?

That we all have red eyes. It's ingrained in what seems like every single movie, TV show, and book with a character with albinism. Family Guy even did a joke on it!

The reality is that most people with albinism have blue eyes.

I find that really interesting.

My grandfather was an albino, he had pink/red eyes. As the only albino I'd met, I had assumed everyones were the same (TIL). He was legally blind but never let that stop him.

I think violet is probably the best way to describe the reddish colour. Under certain conditions our eyes may look red, and there are obvious reasons for that, but more often than not the eyes will appear blue, especially in a doctor's office.

That is also true, I noticed that with my grandfather as well. It was always easy to tell when he was angry with us as his eyes would get much darker. They were very "expressive" really. :)

Anyway, glad to see you doing an AMA!

Usually when my grandparents were mad, they'd just take out the belt. just kidding, my grandparents are dead.

That took a dark turn. But anyway, I wonder if my eyes do the same thing.

I like you, op. You seem fun.

Sadly not at parties :(

Maybe if you talked more... You seem like you have a quick wit.

When I have ten minutes to look at the question and think of something funny :P

I go to college out-of-state, and so live away from home for a good part of the year. Recently, someone knocked on our door, looked at me, and asked "Are your parents home?" I kind stammered, "We're all adults here so... there are no parents." What I should've said was "My parents are in California if you'd like to speak with them." Too bad I wasn't witty enough to think of that first :(

Yeahhh, switchings, belts...I don't miss those days. (Sorry to hear about your grandparents...all of mine are gone as are my parents). But getting side tracked ;)

Maybe! That would be kinda interesting to find out on the eye color. Perhaps you could ask some of your good friends if they've noticed? I always thought it had something to due with blood pressure, since I could always see his skin get a little more flushed... but that was about it...that and his eyes. He had some crazy control.

I talk to a lot of people who say kids were much better behaved back in the day when you could spank them.

Maybe he was like that guy in The New Guy who would stare at you, and then there was the whip and everyone was scared.

The Targaryens are Albinos!!! How did I never realise this? They have white-silver hair and purple eyes

So that's why every AmA is accompanied by a Targaryen joke.

On a scale of one to ten, how badly do you wanna bang your relatives?

Which... which relative?

Wouldn't that technically make you leucistic?

I've never actually heard that word before, but the dictionary definition matches albinism. Maybe they're different because albinism also affects the eyes?

Is the head of your dick a darker color than the shaft?

Edit: one of my highest rated comments asking an albino man about his penis.... Whodathunkit

Let me check...

Well?

Yes!

Pretty cool of you to answer this. I honestly didn't think you would and already searched for albino dicks. So you're off the hook this time.

Have you guys still not been able to find one picture of a legit albino penis? After all this time?

I'd post a link to one, but I don't want this AmA to get marked NSFW. Remind me to PM you.

/u/PM_ME_UR_ALBINO_PENIS

If someone doesn't take that account by tonight, I'll just take it.

I should do my future AmAs with it! :P

Found one. NSFW

It would be handy if you donated visual data to cross compare... for science... totally not a fetish.

The sad part is he's more hung than I am.

;)

I still can't believe no one has found one. Rule 34!

Was thinking the exact same thing while I was reading the question about things he would prefer people not ask about. And then I scrolled down and saw this.

Actually, that and what color my pubes are tend to come up at least once per AmA. It's an understandable curiosity. Let's not pretend that I never wondered what an albino woman looks like naked.

What colour are your pubes?

Orange, actually. It's the damnedest thing....

Well I'll be damned...

Do you-do you want some?

Does a bear shit in the woods?

Does the pope shit in his hat?

I'd assume white...

No? I'd google Albino Pubes but I think that for this Bing would give me better results. Also I don't really want to look.

EDIT - Looked at your picture again. Your eyebrows are white. No reason for pubes to be a different color. Okay. Curiosity satisfied.

During one other guy's AmA, he responded "They ain't black!"

:P But yes, white.

That's kind of awesome for reasons I do not know. You could name your penis Gandalf the White.

For the longest time, I wanted to work in the porn industry. We had a hell of time coming up with a porn name for me.

We settled on Moby Dick.

Rule 34, my albino friend.

It's a lot easier to find an albino girl naked online than an albino penis, apparently.

What's something most people might not know about Albinism? Who's the fictional character you identify with most?

Definitely the visual impairment. Most people with albinism are visually impaired—often legally blind. We can still see—but it's often bad enough we can't see the route number of the bus ten feet in front of us, or the pedestrian crosslight just across the street.

EDIT: Totally missed the second question. Um... on the fly I'd have to say Colin Singleton from An Abundance of Katherines by John Green—but I'll come back with a better answer :)

Can you use glasses or laser eye surgery to fix it?

No, sadly. Glasses and LASIK only fix nearsightedness, farsightedness, and astigmatism. People with albinism can also have these issues and in that case glasses and LASIK may be beneficial to them, but it wouldn't get anyone with albinism to 20/20.

The eye problems in albinism are numerous and permanent (as they occur during development in the womb). Nystagmus, lack of pigment in the retina, foveal hypoplasia, misrouting of the optic nerves, decreased stereoacuity, etc.

My wife has ocular albinism and has nystagmus. It's so frustrating to not have a cure or anything to make it easier for her.

Visual aids! Magnifiers, glasses, reading glasses, and especially monoculars!

I can get up to 20/20 with one of my monoculars. It's bulky and awkward and I'm sometimes embarrassed to use it in public but with it I can see like everyone else can.

Have you ever seen the film Me, Myself and Irene? There's an Albino character in that film, he has some sort of lens attachment on his glasses. Is it an accurate depiction of a monocular?

I think that's probably a bioptic. Bioptics are like mini monoculars attached to lenses. They're great for driving, concerts, class lectures, stuff like that.

Hi Alex! I am a preschool teacher and have a student with albinism next year. Any advice for either me for the little guy?!

There's tons of advice I could give here, but to keep it brief:

1. Try to get as many different accommodation types as possible for things he needs to read personally. Some people like normal print with magnifiers, some people prefer large print, some prefer audio. Some even prefer it digitally (like myself). Try to find the best option now.

2. He should absolutely sit at the front of the class

3. Be sure to ask how he's doing and if there's anything he needs help with. It depends on the person, but lots of people with albinism aren't the greatest about speaking up about their needs. I don't know what it is. Maybe we don't want to bother our teacher. Maybe we're used to just getting by with what we can. I don't know, that's just the case a lot of the times. If my teacher didn't print out the day's notes for me, I would never remind her.

EDIT: Obligatory YAY GOLD!!

i have meatloaf in the oven, how long do i need to cook it?

Siri wants to know the quantity of meatloaf before she'll tell us.

2 1lb container things

Siri is unable to provide an answer. Try Cortana.

i already ate it and got aids. ama

Albinism cures aids.

HUG ME BROTHA!!

Wait, actually?

We don't actually, but it's a common belief in Africa that albino women cure AIDS. Which leads to a lot of rapes and, of course, HIV transmissions :(

Read the container

The container just says "Tupperware." Still not sure what to do.

If it catches fire, it's been in the oven too long. Good luck!

You are unable to tan?

No, I just burn :(

I'm not albino I just have very pale skin (thanks Irish background) but I know the feeling

We should meet up and bond (in the shade).

I read that as meet up and bone.

I mean, we can do that, too.

Do your sunburns turn into tans? I am english/irish heritage so I do not tan outright, but my sunburns do turn into a mild tan.

Not at all :( They just straight sunburn.

I live in Cuenca, Ecuador. Did you know that there is a high number of people with albinism in the region? I see at least one person every other week either in the city or in the countryside. Do you know why that is? How many other people with albinism do you randomly see? Thanks for the discussion!

I knew there was a high concentration in Panama, but I was unaware it was rather high in Ecuador. I don't have a concrete answer, just guesses. However, it must be brutal to live so close to the equator with such easy burning.

I've only ever come across another person with albinism randomly I think two or three times, it's rather rare.

Yes, I think that the people here with albinism, especially those in rural and indigenous communities, must have skin problems. Sunscreen is very expensive and I don't notice them using extra protective clothing like hats and sunglasses.

How would that feel to see another person with albinism more often in the streets?

Thanks!

We came across a girl with albinism selling typical tourist trinkets on a sidewalk in Mexico. She was so badly sunburned it was painful to look at. When it's a rural community or a lower class family, there are certainly things more important than sunscreen, glasses, and hats. It's so sad :(

It would be pretty fun. Random meetings allow you learn a little about someone else's experiences and how they cope. Little bonding experience :P

Do you do any work with albinism outreach? Are there any organizations that work towards helping people with albinism internationally?

Also, do you think that calling a person an "albino" is offensive? Is it preferred to say, "person with albinism"?

In a way. I write for an albinism magazine and am open to talk to people with albinism (like, if we get a new member who's in my area and is looking to connect with others), along with new parents. But beyond that I've never helped organize a conference or spoken at anything on an organization's behalf.

A lot of countries have either a national albinism organization or a support group in the country's capitol. The U.S. has NOAH, Canada kinda piggybacks off NOAH. Mexico has their own. Australia has the AFA. New Zealand has the New Zealand Albinism Trust. UK has their own organization, etc. There is a... I think it's called the Global Albinism Alliance or something like that. It was an effort to join together all international albinism organizations, but so far it's small, exclusive, and the only thing they've done is petition the UN.

There are organizations like UTSS and Asante Mariamu that are based in North America but focus on people with albinism in African countries like Tanzania, but that has more to do with the murders there. In general, each country has their own organization.

Personally I don't find it offensive, but a lot of people do. Historically, albino has a negative connotation and is often used as an insult. So while there is no right or wrong way to identify someone with albinism, it's preferred to use person with albinism, and most major organizations do.

Thanks for the explanation!

Do you think that these organizations would be interested in a joint partnership with the American Cancer Society or ICAN the International Cancer Advocacy Network in working with low-income families and people with albinism in developing countries? That would be an impactful alliance that could generate significant and meaningful changes in places like Ecuador.

I don't think so—I imagine they'd want to stay focused on their mission, rather than also taking on skin cancer worldwide. It's similar to how there are both albinism organizations and organizations for the blind, despite people with albinism being blind.

But within albinism organization, we're always looking for sunglasses and hat donations, and often there is a swap for things like sunglasses, hats, and protective clothing items that your child has outgrown, so that other can use them.

But organizations like Asante Mariamu are focused on obtaining things like sunscreen and sending them to Africa. One of my friends with albinism actually filled an entire suitcase with sunscreen and flew to Tanzania. The problem is that even stateside, even for organizations, that quantity is obscenely expensive.

Wow. It seems like there might be some fundraising opportunities with sunscreen providers. That's interesting.

What it boils down to is what do the sunscreen manufacturers gain from either donating sunscreen or giving it to organizations at a reduced price? Sure they feel all warm and fuzzy inside, but that doesn't make them money. They can get free publicity, but sunscreen is a necessity so they don't really need the publicity. And because this isn't a major issue right now, it's unlikely any major news network would pick up the story.

So it comes down to donations, which are also small because, again, few people are concerned with this—usually only those close to people with albinism.

If you're really interested in making a difference, have an organization contact the Bill & Melinda Gates Foundation. Bill Gates gives away money like nobody's business. I've been to his foundation's headquarters in Seattle. $34 billion in support since 1999. If anyone has the money to make a difference (and is also willing to donate it for said cause) it's Bill Gates.

Does your hair hold dye? Could you dye it successfully?

I've never personally tried, but everyone I've consulted with says that yes, it could.

Though, I'm told that it does fade a lot faster than it normally would. But barring that, it would stick.

What's your favorite thing about being albino?

Being incredibly unique :)

Missed opportunity for a snowflake pun here. But seriously, I'm glad you've got such a positive attitude. This thread has been great.

Stay around, it's bound to get better!

What daily steps do you take to protect your skin (clothing, lotions, umbrella?) What sun screen do you use?

Nothing, actually :P I just try to avoid sun exposure as much as I can. I use to apply sunscreen a lot, but I got tired of thoroughly applying it and being all greasy, just to protect myself from 15 minutes of sun exposure that probably wouldn't have done much to me anyway.

I use SPF 100 and I do apply it like at the beach, walking around a new city, at fairs and parks, festivals, etc. Just places where I know I'm going to be outside and exposed to the sun for say 30+ minutes continuously.

Yeah, I avoid sun exposure as well.

Who wants to go outside anyway? Outside is scary!

I prefer /r/outside.

What makes it better than /r/inside?

I hear hornets can fly up one leg of your shorts, walk across your balls, then out the other leg. Who wants that in their life? Not this guy. I'll stay inside please.

The worst part is that once you realize it's in there, the only way to kill it is to hit yourself in the balls.

Have you tried non-US sunscreens? After hearing about Japanese ones for a while I tried Biore Watery Essence (they all have goofy names) today and seriously could not tell I was wearing sunscreen; it didn't feel the slightest bit greasy or smell like baby powder or whatever.

I got some sample sunscreen in Australia, it was pretty much the same. There's another brand of Australian sunscreen called Blue Lizard that apparently lasts all day.

But I'll look into the Japanese ones.

Does everyone you meet think you are an albino? Because you look pretty normal (<- is this rude?) to me

I'm not sure, very very few people actually ask. Though I would assume... 40% know? Ballpark.

I'm always told I'd look normal in most Nordic countries. But when it's something like downtown Los Angeles where most people are dark skinned, or light skinned but with black hair, I'm definitely not normal :P

Am from Ireland. Most people here are pale (due to vitamin D deficiency), so I guess that's why you look mostly average to me

But I don't have a high alcohol tolerance, so I still wouldn't fit in :(

Heh, I'm a darker skinned guy with zero alcohol tolerance. I was like a unicorn in Ireland. They had no idea what to do with me. Ended up going home earlier than I thought.

HAHAHAHAHA!!!!!

Wouldn't you just sit on a faraway corner and drink soda the entire time? I mean, what does the designated driver do at bars?

yeah thats looks normal here in Finland... well at least in winter season

We think albinism is highly under diagnosed in Nordic countries like Finland because blonde hair and blue eyes are pretty much the norm.

Hey, I'm curious about your experience with race and your albinism.

1) Are you white or some other race? How different from the rest of your family are your features?

2) do you encounter a discrimination because of your albinism? How do you think your experiences compare to that of minorities in your area?

I'm Mexican-American, so my entire family is fairly dark skinned. Not like black, but definitely far darker than I am.

Actually, most people think I'm white—especially if they never know my full name (Alex isn't my legal name). It's kinda the best of both worlds because to people who don't know me I'm just a really really white guy. But I'm fluent in Spanish, try my best to keep rooted in Mexican culture, and thoroughly enjoy freaking everyone out when I go to Mexico.

I have a friend that is an albino Asian, and as a kid, I never knew he was albino (since I didn't know what that was) so I was confused when I saw his mom and sister.

My questions are:

Do people think you were adopted if they see you around your family?

How bad is your vision?

Definitely. People sometimes ask my mother if I really am their son.

I'm in a bit of a rush, but I also really want to share this anecdote. When I was a little kid, my mother lied to some people and told them I was adopted, just to avoid explaining why I was so white compared to her. And a few weeks ago a longtime friend caught up with her and was like "And what about that little white kid? The one you adopted? I heard he moved away to Texas for school." :P

20/400 uncorrected.

Is there anything you wish people would or wouldn't ask you about?

Nothing specific, I just wish more people would ask questions in general. That's why I love doing AmAs so much—everyone can come on in and ask any question they've ever had on albinism, from the sophisticated to the mundane. It's very very very rare that I get questions in public, most people just stare.

You should make a shirt that says, "Yes, I'm albino. No my eyes aren't red"

Something like that.

Like my Keep Out of Direct Sunlight shirt?

Is it true that albinos ride spiders the size of hounds?

Yeah man, sure.

Sorry, just messin around. Glad you are doin this and I totally hear you on the blue eyes thing. I'm from Michigan and I know there are some groups up north in Canada with albinism. Would you say that a colder climate is more ideal?

It depends. The snow + sunlight combo is fucking hell on our eyes! Just so damn reflective. So if it gets so cold that it snows often, that won't work. But I definitely prefer cold weather to warm weather.

Being an Albino yourself, have you ever hoped to find an albino girlfriend instead of a non-albino girlfriend? (assuming you're straight, if not, boyfriend)

I've dated several girls with albinism. It's not... dating someone else with albinism is an interesting, deep connection that you might not find in most other relationships. But it doesn't come up that often and personality and stuff matter more than albinism.

I think it would be fun to ultimately marry someone else with albinism, but I don't primarily seek out girls with albinism. Whatever happens, happens.

How was meeting Elizabeth Warren?

Fun :) She's so friendly in person and I wish I could've had more time to talk to her. Maybe when I'm a journalist.

You're very pretty! Being an albino, do you think that you get more disadvantages in your life, like finding a job?

Thank you :)

I can definitely see why an employer would pick someone else instead of me, it's a common complaint of people with albinism that they're overlooked for jobs just because of vision. I think it just boils down to finding someone understanding and willing to work with you, along with you bringing to the table your own solutions.

I'd probably be more likely to be hired if I told the employer "I will provide my own magnifier and copy of Zoomtext" instead of saying "I'm going to need you to start printing thing in large print for me." The ADA is a fantastic piece of legislation—but because it forces employers to provide reasonable accommodations, it can make some run the other direction.

Lighter color eyes are usually better at seeing in low light. Do you have good night vision? And do you think that hypersensitivity is partially the fault of poor vision? Are you able to see more clearly in lower light?

Cheers.

My night vision is better only because there isn't as much bright light (like, you know, a giant sun) around. So it's easier to see and focus on things. Also clouds, as it's still daylight but there's no sun :)

There are a number of things that cause the vision problems in albinism, but yes photosensitivity is one of them.

I kinda thought daylight would be like an over exposure to your eyes.

Thanks for the AMA, great to learn directly from the source.

You know when it's 3 a.m. and dark in your room and you can't sleep? So you turn on your phone and the screen looks like it's composed of a thousand suns? For some people with albinism, that effect happens every time they're exposed to any kind of bright light (a flash on a camera, opening the blinds, etc.) Worse than that, exposure to bright light is often painful.

For me, it's only a problem during sunrise and sunset when the sun is directly in my line of sight. In those situations, I actually have to stare at the ground while I'm walking because looking straight ahead is just not possible, the sun is WAY too bright. But with most other situations... I mean my eyes still have to adjust to that phone screen at 3 a.m. or walking outside from a dark room, but it's not painful or otherwise bothersome.

Are you the whitest kid everyone knows?

Unless you have multiple friends with albinism. Then it becomes a pissing match.

Who do you cheer for while watching "The Omega Man"? 8)

I've never actually seen that. Is it on Netflix?

I just checked, nope not on streaming anyway. Just asked kinda as a joke. Its based on the same book as will smith's "I am legend". But in that movie, all the people that are hunting Charleton Heston's character are costumed up like they have albinism.

That sounds like the best movie ever!

I don't at all mean this in an offensive way, but why don't you dye your hair?

Well for one I can't pick a colour :P

For the longest time I just didn't like the idea of change. I like being who I am and didn't want to alter that. I thought dying my hair would look awkward and feel awkward. Now, I'm totally willing to do it, I just can't pick a colour.

I suggest a pastel... like lavender!

Wasn't Lavender the cute black girl from Matilda?

Hi Alex! How has trying so hard to stay out of the sun affected your daily life? Do you ever feel excluded from social situations because of it?

Not much once you get used to it. A lot of outdoor activities like sports (watching or playing) I wouldn't be able to do anyway because of vision. I've just never been an outdoorsy person, which I guess makes me a perfect redditor.

I'm excluded from social situations more because I just don't fit in looks wise and personality wise, and getting around was forever a challenge. So while my school friends would go on a Starbucks run or go to the mall/movies on weekends, I was never invited. Now that I have the flexibility to get around, I just do all those things on my own.

Hi Alex! What sunscreen do you use? Do you have to use it all the time?

I use SPF 100, but very very rarely. Like four times a year or so. I use it so rarely that my three bottles actually expired this year :P

I used to use it way more often, but I figured just staying out of the sun was a better alternative.

Does expired sunscreen stop working? Have you ever considered a position in sunscreen science? You could make a major breakthrough in the field of expiration dates

Actually, some sunscreen bottles don't even have an expiration date! But I assume that expired sunscreen just isn't as effective—similar to expired medication. I've taken expired diphenhydramine before (didn't know it had expired). It worked, I just had to take a higher dose.

I believe the rule of thumb is to replace your sunscreen every year—probably spread by the sunscreen industry. I just figure: If it's the same bottle of sunscreen you took with you to Australia 2 1/2 years ago, it's probably time to replace it.

I've used a bottle of sunscreen once that was expired and it actually created almost an oil? It burnt me worse than if I didn't wear it. http://imgur.com/Y9BM5sB

I've never met anybody paler than myself, so nice to meet you!!

Jesus Christ!! That hurts just looking at it.

I love hearing "I'm the whitest person ever" on movies and TV shows. Makes me wish I was there to speak up :P

I'm sure youre painfully used to "OMG compare arms with me!! wow!!"

Actually, I'm usually the one to instigate that :P

Here's a comparison we did last albinism conference: http://i.imgur.com/i6MbuMp.jpg

So does the movie Powder offend you in its use of an albino kid as the main character or do you think it's awesome?

I've never personally seen it. Most people I talk to don't like it because, while the main character is not evil, he's still bald, has a silly name, gets killed, and the actor who plays him doesn't actually have albinism. Plus, doesn't he become albino because his mother gets struck by lightning? And then he has the power to control lightning?

I'll watch it someday, and I'm sure I'll enjoy it because of how ridiculous the concept is. But the albinism community in general doesn't see it as a movie that portrays albinism in a positive light (pun intended?)

The thing about powder is that I'm not sure its as fair to call it a movie about an albino person, as it is to call it a movie about a person with several incredible post human qualities, one side effect of which is albinism. He's a super intelligent mind reading empath, and at the end of the movie, its implied that he actually transcends flesh and becomes an energy being. Trying to decide one way or another whether the movie is a good or bad portrayal of albinism is a bit silly, because a regular albino person is not what the movie set out to portray.

That's a perspective I've never heard before. I always assumed albinism was kinda the central point of the movie (or central focus, since after all his name is synonymous with an insult to albinism).

Fingers crossed it's on Netflix/Prime—or like $5 on Amazon.

Thoughts on Brother Ali? He is a relatively popular Albino rapper from the Midwest for those who don't know.

I'm still sad that I missed his concert last year. I don't actually listen to any of his stuff regularly (like I haven't bought any of his music) but I've heard plenty. Nice to see an artist with albinism be decently famous :)

Are you vitamin d deficient?

I'm not sure, and I doubt I've ever been tested for it. IIRC, vitamin D testing is rather expensive and not routine.

Though one study did find that a lot of people with albinism are vitamin D deficient. The good news is that the daily amount of sunlight exposure required to get a daily dose of vitamin D is very very very low. Like, lower than what would burn you.

Do you do anything special because you have it? Like things we may not know about people with albinism.

For sun protection, if I'm going to be in the sun a few hours, sunscreen is a must. I can't just shake it off and fallback on my tanning ability if I forget. I either wear it or burn.

You know how on smartphones you pinch to zoom on a website and then pan around? Imagine doing that on a desktop, that's how I use a computer.

What else, um... I use a monocular to see things that are far away. Think of it like one half of a pair of binoculars. Pedestrian crosswalk indicators, store signs, the board in class, things like that.

Could we have a picture of the monocular please? It sounds like a cool little tool.

I have four :)

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

Thank you for your time and effort.

I'm sorry to have only a superficial question - are your areola or foreskin darker than surrounding skin?

Areola yes, but it's more like a dark pink.

Foreskin... towards the end, it's hard to describe.

This is a fun fact of mine that I have to mention. I have two cousins that have albinism and are very successful. They are brother and sister and happen to have the same birthday two years apart. I have heard (but never really asked) that their parents happen to both have this gene that no matter what, they will have children with albinism and they don't have it themselves. Is there any truth to that? I have no idea if you can answer it, just thought I would ask. I am not close enough with them to really get into it with them and I thought maybe you would have some more insight since you've probably talked to doctors and such about it. Secondly, one of them is gay, albino, and lives in New York. Not that any of those are related, but I really respect his confidence with all of that (he is married :)). I know high school may have been hell for you. Did you always just embrace yourself and how you are and let people deal with it or did you feel like an outcast? If you felt like an outcast, and you don't anymore, what helped you feel comfortable in your milky skin. I always love to hear how people finally say fuck it, I am who I am. Is there any transition that you can think of where someone maybe made fun of you and you didn't take offense, you just thought 'that guy is an asshole' and how you came to that realization? Cheers.

So, in order to have a child with albinism, you have to carry the gene for it. The albinism gene is a recessive gene and both parents must be carriers to have a child. But even when that happens, you have a 1/4 chance each pregnancy of having a child with albinism. I've seen families of four where three kids have it. In my personal family I have three siblings without it. And I'm sure there are plenty of families with no albinism cases despite the parents being carriers. So the parents aren't personally affected, but could have a child with albinism.

I always felt like an outcast simply because I was. Going out to the mall, the movies, Starbucks, weekend trips to San Francisco—I was never invited to any of that. Yes everyone liked me and respected me at school, but I basically just had school friends, acquaintances. I didn't have any close personal friends and I was always excluded from social situations/outings. But it never really bothered me, just more of an opportunity to sit around and do research :)

I actually didn't get picked on much growing up, so I can't think of a real transition period. But I think after middle school is when I would just brush it off. After my first albinism conference is where I became a LOT more comfortable, along with learning so much more about the condition. The genetics, the research, etc. And after that was when I started doing AmAs and writing articles and sort of... making it more a central part of my life, rather than just something I knew I had but didn't think much about.

Albinism has always fascinated me. I know you have a plethora of medical issues because of your albinism, but to be honest, you look really fucking cool. Does albinism run in your family?

Thanks. Though albinism definitely lowers your attractiveness level, it makes you unique—something a lot of people strive for.

It does in the sense that it's genetic, but because it's a recessive gene, it's very rare to actually have a child with albinism. You're more likely to just carry the gene down the family line.

Do you know the albino rapper Brother Ali? He's pretty fucking dope.

I've heard his stuff, but I don't own any of his songs.

I'm still upset I missed his concert last year.

What is your SPF of choice?

100, for shits and giggles.

Your hair looks soft. Is it soft?

Also, if you were stuck on a desert island and could take only one non-necessity, what would it be?

Most people say it is. It depends on what you put into it.

Is porn considered a necessity?

How long does it take to sunburn?

I'd say around 30 minutes or so. Depends on your definition of a sunburn. If it's just redness, probably faster. If it's redness that physically hurts and is warm and you have to throw aloe vera on... probably 30 minutes or so, give or take.

What type of person do you see yourself as cats, dogs, both or neither?

I have both. Cats, 100%.

What SPF sunscreen do you use?

Coppertone Sport SPF 100.

Are all albino's evil? It seems that way in the movies.

Ok, enough with that, my best friend is albino and he jokes about that all the time. Take care of your skin and don't skimp on your dermatology appointments. He just had a small melanoma removed from behind his knee. Right back in the fold behind the knee. One of those places that is probably easy to miss when applying sunscreen.

It does, the evil albino is a typical Hollywood scary movie go-to.

One of my close friends with albinism who's much older always tells me the same thing. She had several removed at one point and it definitely doesn't sound fun. My last check was... three months ago? So far so good!

What's your favorite tanning salon?

The one... so, I know massage parlors have happy endings. Do tanning salons have happy endings? Because the tanning salon that has a happy ending is my favourite one.

Unless none do, in which case I'll go with the tanning salon the Jersey Shore guys use.

That's cool?

I mean, I think so.

I agree.

Me too.

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Who the fuck said you could leave your cage, AutoModerator?

oops... my bad, i forgot to lock the cage

You had one job!