I have albinism—AmA

Would you ever dye your hair and eyebrows a different color to see what you would look like without albinism?

Absolutely.

Why haven't you?

I can't pick a colour, or find a stylist who thinks it's possible. But it's on my list!

One of my best friends also has albinism and regularly dyes her hair all sorts of awesome colors!

And it sticks? Does it fade?

Depends on the product. Some last a few showers and some are 'semi-permanent'.

I'm assuming the amount of pigment one's hair has wouldn't make a difference in how temporary the dye is?

No, in fact if a dark haired person wants to put in bright color they have to get their natural color bleached out first. Darker colors hold longer. If you consult with the stylist ahead of time, some dye companies also offer shampoo to help hold the particular color you get. Washing in cold water also helps hold. Maintaining color is just a tricky reality of vibrant hair dye.

Makes sense, thanks for sharing :)

Go ask /r/fancyfollicles. I bet they could point you in the right direction!

I didn't know that sub existed! Definitely posting there after.

I mean you don't have to pick one, just go with temporary dye so you can change it whenever you want!! Except for Splat! brand... They say they are temporary but seriously, their reds and pinks NEVER go away. They turn highlighter pink and never come off. xD

I've heard good things about... I think it was manic panic, can't remember if they make temp though.

I know a girl who is also an abino and tints her eyelashes and eyebrows a bit darker, it looks good but honestly I don't think she needs it! I have always been so jealous of her blonde blonde hair though. Would you say that being albino has hindered you or enabled or not affected making social connections with people? Also the girl I know has these cool purpley eyes. Do you have this too?

Albinism hasn't hindered me in making friends but it's hard to say if that's the case with dating. So much emphasis is placed on physical appearance when it comes to dating.

My eyes are actually a mix of colours

Let's go! I vote ginger, like a really deep ginger.

If this was an actual poll and 4chan brigaded it, what would be the top answer?

Leopard print. Then you could be a snow leopard!

Could I then be featured on Planet Earth?

Top vote would be white, probably

Eggshell white

This may sound dumb but when you'll get old, is your hair gonna get gray? Or not since it's already white?

I remember when I asked my teacher that in like middle school, got a lot of good laughs from my class.

Anyway, it'll be white, probably moreso than it is now.

That's making the hopeful assumption you get to keep your hair... =/

If I end up bald, I want a comically shiny head. Like so shiny you can use it as a mirror!

Do albinos really get kidnapped and their bones get sold on the black market?

Yes, but only in certain African countries, namely northern Tanzania.

That's fucking crazy. Why specifically albinos?

Witch doctors outnumber real doctors like 3:1, and they believe that people with albinism have magical powers. They use our bones, skin, and hair to make potions that will make the people who drink them rich and powerful.

I wish I was kidding.

Well... Do you have magical powers?

...no comment.

If we were to put you on a scale against a duck which way would the scales tip?

It would be even.

Hair? Dude, find a witch doctor with an eBay account and start selling him locks of hair for $$$ at a time!

But what if they track me down and kill me?

Hey where do you live?

42 Wallaby Way, Sydney.

ur the dentist from finding nemo?

I'm actually his sadistic niece.

What the fucking fuck.

I don't know man, it's really awful.

I have known one person with albinism in my life. He drove a Segway everywhere.

Therefore, my question is: do you drive a Segway?

No, but I really want one. Do they require excellent balance like bicycles?

Exact opposite - they're designed to balance by themselves (afaik).

Sweet, I should totally get one.

Looks up segway prices Holy shit!!

You underestimate the power of Reddit

What can Reddit do?

Come on guys, let's buy this lovely fellow a Segway

Thanks guys, but ya'll should donate that money to an albinism charity. I'll get my own segway, and deck it out with blackjack and hookers.

How's your vision?

Pretty terrible, around 20/400 uncorrected, slight photosensitivity.

How well can that be corrected? I have about the same vision uncorrected, but I have 20/20 with glasses/contacts. I couldn't imagine living with 20/400!

Someone mentioned they were 20/600 without correction but 20/20 with glasses, so jealous! I can get to around 20/180 with glasses, 20/100 if I really strain, but distance glasses are good enough for most applications. I have a monocular that can easily get me up to 20/20, but it's quite cumbersome.

Do you know if laser eye surgery would bring your vision to 20/20?

No, it would probably just permanently bring me up to 20/100, if even that.

Mine is 200/20!!!!! Only I just have bad eye genes not albinism

But is it correctible?

How has albinism impacted your life?

That's actually an interesting question. In many ways it has and in many ways it hasn't. For daily life, obviously I look WAY different from everyone else, but it's never in the back of my mind anymore. The vision problem are a little less easy to ignore, but with monoculars and accommodations it's pretty easy to get around and still be successful in school.

Over my entire life? I'd never have experienced albinism conferences and research opportunities had I not had the condition. But I can also still travel, go to the beach, attend outdoor events, etc. With some extra precautions obviously, but it's not like I'm unable.

You said you "look WAY different from everyone else". I don't know where you live, but I guarantee you that here in western Europe you could just be someone with bright hair and pale skin. You look completely normal, if it makes you feel better!

I've always been told that I'd definitely blend in in most Nordic countries. I mean there are plenty of caucasians here, but most of them don't have white hair.

Dude maybe it's just the picture, but even in northern Canada if I saw you out I wouldn't think twice, let alone imagine you have albinism.

This is why we think albinism is underdiagnosed in these places, people with albinism just blend in!

Hear that bullies? Single these damn kids out!

For science!

"Beatings for Science" I'll start mass producing the light pink t-shirts

Best band name ever!

Definitely. You kinda look like a lot of people i know in Sweden. Nothing weird at all to be that bright.

I should totally move there, especially with the impending doom that will surely come with our new president.

I'm very fair with light blond hair, you say you have to take extra precautions for outdoor activities, are they different than the precautions I have to take?

I don't do much other than avoiding going outside unless I have to, staying in the shade as much as possible, and wearing sunscreen when I know I'll be out for long periods of time. Large brimmed hats and long sleeves are also options, but not ones I use.

Do you have to take any precautions in your daily life to protect your skin, or as a result of your albinism?

PS, nice glasses!

I walk really fast to limit my sun exposure and try to stay in the shade whenever I'm outside. I really should be wearing sunscreen, but it smells bad, takes ages to apply and seep in, and it just doesn't seem worth it when you only need 10 minutes of protection to walk to class.

I'm actually so shocked you don't wear sunscreen! I'm not albino, but I'm very, very fair skinned and blonde. I live further from the equator (around 38 deg north), but in college I could and would get sunburned just walking to class. I wear sunscreen every day I leave the house, full stop.

A lot of American sunscreens are uncomfortable as you describe, but Asian countries have it figured out. Head over to /r/skincareaddiction or /r/asianbeauty and do some reading. Biore watery gel/essence is a popular one, it feels like nothing on your skin. Your skin has almost no natural protection like most people, you are damaging it much more than you realize.

I guess it depends on your definition of a sunburn. Even with my sun exposure, my skin is never red and never hurts, but definitely darkens compared to the rest of my body.

But still, great suggestion! I've been recommended Australian sunscreen but never told about Asian sunscreens—other than apparently people try everything they can to get and maintain fair skin over there. Anyway, I'll look into them further once the AmA is over.

Why don't you wear a physical sunscreen you can put on in the morning and it lasts all day? Then you wouldn't have to worry about it.

I still don't really trust that brands like Blue Lizard actually do last all day, especially when sweat is involved (the Texas heat is brutal and I regularly walk 20 minutes to class). It's a good idea that I honestly never thought of before, but mainly because I discounted those claims ages ago.

There are spray on sunscreens that dry fast and aren't greasy. Spray ons are the easiest and quickest to put on.

The jury is still out on spray-on sunscreens. It's possible to not apply enough or to not get a good enough coverage because you're spraying. There's a possibility of breathing in the sunscreen. And overall, they tend to cost more per application than lotion sunscreen. A solid idea, but the coverage problem keeps me to manually applying.

I have really sensitive skin and hate the stink of sunscreen. It stings my skin, gives me rashes, ugh.

So I was really bad about caring for my skin in the sun. Then two things happened:

1. My mom got skin cancer. Shit got real for me quick.
2. I had a child

As it turns out, sunscreen for infants is amazing. Smells so much less. It's very gentle. Not greasy. Still very strong. And it's cheaper than noncomodogenic adult sunscreen.

Now I always keep a bottle of Aveeno Baby sunscreen around for both me and my son.

My former boss has albinism and is in her 50's. She constantly berates me about wearing sunscreen because she had to have cancerous moles removed from her hands. It hurts and doesn't look pretty. We all ignore the risks until it happens, myself included.

But thanks for the tip. Sunscreen doesn't irritate my skin but it's greasy and takes about 15 minutes to fully seep in so you're not greasy anymore. I wish we could have like sunscreen pills.

Wear long sleeves and hats

Wouldn't that get kinda hot? Even in 40º weather, I'm sweating by the time I finally make it to class, and that's in only a t-shirt.

How does walking fast in the sun limit your exposure from the suns ray , aren't you running into the suns rays faster if your walking much faster?

Didn't Mythbusters test this about walking v. running in the rain?

Can you jump?

I can!

What is your favorite dinosaur?

Tyrannosaurus rex.

So ethnically, are you a black or white dude? If black, have you ever had a weird moment when you get into a group of white dudes, something racist is said, and then you're like "eeeeeh, double agent here fam."

Oh man, I'm having flashbacks to the last AmA where there was a long argument over the difference between race and ethnicity and where caucasians came from... it was bad.

Anyway, I normally put down white for race and Hispanic for ethnicity. My parents are both from Mexico, ancestrally I'm mostly Native American and Southern European.

It's really freaky for people when I speak Spanish, especially fellow Hispanics. They just think I'm another white guy and BAM! Fluent Spanish with the accent y todo! Most people I meet, not just Hispanics, think I'm just another white guy.

"With the accent y todo!" LOL

Spanglish!

Orale, chingón! Follow up question: Favorite Mexican dish?

Tamales, or those tiny street tacos, carne asada!

Have you tried working in Japanese movies?

I can totally see you working in Japanese regular movie industry.

I had to stress regular there.

Never, though if you know a guy who knows a guy who casts for those, I'd be down.

Even if it's irregular Japanese films. I'm not gay, but $20 is $20.

My man

Fistbump

I don't sorry :(

Well I mean if you ever meet someone, you know where to find me!

I will contact your agent.

Your people can call my people.

Has albinism stopped you from doing certain things? If so, what things?

Definitely playing sports. I have problems with depth perception and stereoacuity (I can almost never see 3D effects) so tracking moving objects (along with a lifelong fear of being hit by them) makes playing sports almost impossible. Tabletop games like ping pong, foosball, air hockey, etc. are good, but anything on the field and you're gonna have a bad time. There's a reason I was always picked last for sports teams.

should go do running or weightlifting or something dont need to see well for that

Swimming is another option. I definitely exercise enough, I can go out, but yeah weightlifting would be fun.

A shredded Albino dude? you would be like Saitama if you shaved your head.

Let's do it!

How about video games? Can you enjoy them?

I have to get kinda close to the screen to play, so split-screen multiplayer was never fun (I hear that's dead now, though). My cousins would always complain that I got too close to the screen and blocked their view.

Single player? I played the shit out of The Sims when I was a kid. Halo, GTA, Max Payne, Simpson Hit & Run, etc. Today I don't have a console or even a TV, but I play Minecraft and GTA San Andreas on my iPad mini when I get a chance. And Sim Tower.

Eric Cartman did it right ;D

Respect my authority?

Have you heard of this chick? She uncovered a fetish for albinos I never knew I had.

I'm sure she's been covered by AI or Positive Exposure at some point. I just can't quite remember. But she's cute, totally following!

What color are parts of your body that vary by pigmentation in non-albinics? I guess what I'm asking is, "is your butthole brown?"

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

For science I need you to look at it in a mirror. This has been an ongoing discussion with my friends. Pink vs White vs Brown.

I need to know this

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

Need some time to yourselves?

Yes please.

He has terrible vision, he'd need to hook a telescope to his ass to see.

Same with my penis.

Hahaha ha ha... Sobs

That must be the white in you then.

Sobbing intensifies

Lmao.....Is the tip white?

My fingertip? Yeah.

Nah, son. That's not what we wanna know.

The tip of my nose? I mean I can't see it but I presume white as well.

What is it like living in Albania?

It sucks. We don't get any of the cool American TV shows like Jersey Shore.

Do you know another person with your disease condition? Did you ever share your experiences with someone who knows first hand what you're talking about? If so, how did you feel about it?

I've met loads of people with albinism. Every year, there are these conferences for people with albinism (and their families). Usually 100 - 300 attend depending on the event. I could go on for ages about how incredible they are, but they're best summarized by someone who went and said, "For the first time in my life, I felt normal."

Do you find you're more attracted to other people with the same condition?

Girls with albinism are absolutely gorgeous and the condition itself is very beautiful, but I still place a strong emphasis on personality.

You clearly have a rock star personality.

Thank you!

I can't see it in the proof, so, are your eyes red?

Edit: Wait, I just remembered that maybe I can't see it in that picture because I'm colorblind

They're actually a mix of colours

I spent some time in East Africa and I was so surprised to find how frequently you saw albinos around town! Do you have any idea if albinism occurs more frequently there or in any specific countries and why? I thought, maybe it's the same frequency, it just stands out much more in a country where everyone is black. Any thoughts?

I wrote an article on this, I should know it!

The highest incidence of albinism is in the San Bias region of Panama, but OCA 2 (type of albinism) is most common in parts of Africa. I'm pretty sure the incidence of albinism is higher in Africa than other continents (obviously higher than Antarctica) but I'm not entirely sure why.

This seems like an appropriate place to ask my questions -- Is there any association between albinism and vitamin D? Do you need to take supplements because you can't be in the sun? Do African (black) albinos suffer the same problems in the sun as whites, or is it different?

As far as you know, are there any medical conditions which are prone to one ethnicity more than another whose rates are different among that ethnicity's albino population? (Example: sickle cell anemia)

Is it theorized that some people with albinism are vitamin D deficient because of all the precautions they take to avoid sun exposure. The amount of sun exposure actually needed for a day's vitamin D is actually really short, like 15 minutes or less, but still. I personally don't take supplements, but I do try to go out and walk around at leas once a day.

Africans with albinism have to take the same precautions as everyone else. They may or may not develop slightly more pigment than the average person with albinism (because often they have OCA 2) but overall they will still sunburn.

One study found that people with albinism have an above average prevalence of ADHD, but the study has not been conducted again. I haven't heard of any linkages, but albinism research is still fairly young. Excellent question!

How often do you find yourself explaining albinism? What common misconceptions do you always find yourself explaining?

Just these AmAs, which is part of why I do them. It's very rare to be asked about it in public. Even friends/classmates rarely ask about it.

By far the most common is the myth that all people with albinism have red eyes. I've had someone tell me that I don't have albinism because I don't have red eyes. Second isn't truly a misconception, but a lot of people are unaware of the severe visual impairment associated with albinism.

Can you watch Always Sunny in Philadelphia or are you too sensitive?

I've been meaning to watch that entire show. I saw the D.E.N.N.I.S. System episode and fucking loved it.

I got my box of Magnum condoms, and my wad of hundreds!

How has albinism effected you socially?

Interesting question. I have no problem making friends or exploring cities or really interacting with society. However, the terrible vision makes it hard to pick up on nonverbal cues. Easy sunburns mean I can't just go for a spur of the moment outdoor picnic or concert or even conversation. Shade or indoors.

It's not "albinism". It's "acute hyper-honkeyism".

That makes it sound much sexier!

Can you enjoy the outdoors for long periods of time with precautions?

Not without burning!

What would you like to tell a kid that has it?

NOAH actually proposed a challenge where you had to answer two questions:

• What do you want the world to know about living with albinism?
• What message or words of wisdom would you share with a young child with albinism or the parent of a newly diagnosed child?

The catch is that you could only use three words. I think my answer was "it gets better" or something like that.

Here are other people's answers

Hey great ama! Have a couple of questions. Will your vision get worse with time or will it stay the same? Does cold weather affect you differently?

People with albinism are still susceptible to cataracts, macular degeneration, etc. But overall, my vision won't get worse due to albinism alone even with age.

Albinism makes me impervious to the cold! :P As far as I'm aware the condition doesn't change how a person is affected by the cold, I've just gotten used to cold weather to the point where I seldom wear a sweater, even when it's 30º out.

What do you like to do for fun?

Reddit, all day every day.

Seriously, lots of Reddit, TED talks and TEDx events, watch documentaries. A lot of indoor activities, as you can tell :P

I care for a little girl with type two ocular albinism!! What challenges did you face growing up? Did people make fun of you? I just want to know what I should be prepared to help her through (besides applying thick layers of sunscreen every 45 minutes in the summer 😁).

Not many other than just staying out of the sun. I wasn't bullied often thankfully. Oh and not being able to see the board in class.

Lauren Berglund has does a great series of videos for kids with albinism and their parents. Watch it and feel free to ask any follow up questions you may have. I'm about an hour behind on answering questions but I'll be here all day.

How has it impacted your daily life having the sun as a mortal enemy?

I walk faster than most people and stock up on SPF 100 sunscreen (but seldom use it because I'm a rebel).

Cloudy days are the best days!

You should move to the UK. You'll never have to worry about the Sun being a hindrance ever again.

Or Seattle, but then it's always raining. Is the UK just constantly overcast without it actually raining?

The Seattle rain tends to be drizzly, not downpour-y. Honestly, it's probably an awesome city for you. Get a North Face jacket with a hood, and DON'T get an umbrella, and you're ready to go!

I've been to Seattle and absolutely loved it. And yes, I heard the joke that only tourists use umbrellas, the locals just get wet. It's definitely somewhere I'd consider moving to once I finish school.

Overcast with cold wind and spurts of drizzle.

I mean I would come over but... I wanna see the Brexit stuff calm down first.

But then again, with Inauguration Day looming... maybe I should pop over.

As someone who has been jokingly called an albino due to my fair skin I'd have to disagree with you. I get burnt more when it's over cast versus when it's sunny.

I've been told that UV rays pass through the clouds. Cloudy days are better because of photosensitivity, not sunburns—though you definitely don't feel like you're burning alive as much when it's cloudy.

We also probably have different definitions of a sunburn.

What are the medical effects you suffer from this? And how was your school life being an albino? Were your classmates nice or were there some assholes in there? Cheers!

Albinism, medically speaking, is primarily classified by a severe lack of pigmentation. This affects visual acuity to a degree, which varies from person to person.

I grew up in a small town and with all my classmates. The people I walked with on my high school graduation night where the same people I played in the sandbox with in pre-K. So they were all well used to me and fairly nice. Though I've heard some horror stories...

Do you have any worries about having a child that doesn't have albinism? Just the implications of as they got older, wanting to play sports, generally be outside, etc.

This is an interesting dilemma. On one hand, having a child with albinism means that I would understand exactly what they're going through. On the other hand, would you want your child to go through the same hell and struggles you went through? It's a difficult and very personal decision. For me, well I don't really feel like even having children for reasons other than albinism. But overall, my stance is that I'll cross that bridge when I come to it.

What's your favorite portrayal of albinism in a movie?

I haven't seen many films that portray people with albinism, but I've heard very good things about Me, Myself, and Irene. It's not a film, but I loved the MTV True Life episode on albinism.

First off I know nothing about albinism. Can you get a sunburn? And are they severe?

I can get a sunburn, much more easily than most people. I've never gotten a sunburn that blistered, the severity is the same as it is for most people, it's just that I can get them more easily.

Wait what happens if you have a child with someone whom is really really black? I mean dark, well dark black. 11:59PM dark.

I don't know, let's find out! I volunteer as tribute!

Did you catch the Falcons game yesterday? They were BALLIN.

I didn't, no TV here :(

Who's going to play the next Super Bowl?

Is this true albinism or lucism?

True, genetically verified oculocutaneous albinism.

Do you listen to Brother Ali and Krondon?

Not regularly, but I've heard their stuff.

So you mentioned not being able to see even someone's eye colour stood in front of them. How are you currently typing? Have you learnt the position of keys or using a accessibility feature like speech to text?

The reason I ask is because your grammar and punctuation is amazing, if I had something that made it harder to type, I don't think I'd give it as much effort as you do.

I've learned the position of the keys but I chicken peck. I also make frequent mistakes that I have to either backspace and correct or that autocorrect takes care of for me. I don't look at the keyboard when typing. They tried to teach me touch typing many many times but because of how close I have to get to the screen, my elbows would dig into my side if I did the whole home row thing.

Have you ever tried dying your hair just to mess around with people? Your hair is the perfect canvas!

Never tried it, but always wanted to.

Do you notice a lot of people stare when in public? Or have you gotten so used to it you don't notice it anymore?

I'm sure they do, I just can't actually see them doing so. Even being face to face with a person, my vision is too terrible to see where they're looking or tell their eye colour. From a distance? Forget about it! (fuhgeddaboudit?)

I was once walking with my cousin down a main road and after a few blocks she just says "Dude, everyone is staring at you." I couldn't even tell.

is it the hot albino dude? it is!! what's it like being vaguely internet famous?

Pretty cool, though the more famous you get the more trolls come your way. Haters gonna hate, you just gotta shake it off!

What's that one joke every person says when meeting you that they always thinks is clever and original but it's been said a million times?

None, people rarely bring it up. But the "Are you allwhite?" question in these AmAs gets kind of old after a while. I get they're trying to be clever but... no.

Cue everyone asking that in response to this comment

As I have got older my dick has gone a few shades darker. Has your duck changed colour?

My duck has stayed the same colour all these years.

Please forward any further questions about my duck to /u/fuckswithducks

Can you spend your holiday on a beach without suffering heavy sunburns? I imagine it is difficult to avoid the sun during holidays.

I just use SPF 100 sunscreen, applied liberally and frequently according to guidelines. It works wonders!

Have you ever dyed your hair, such as brown? You honestly look quite normal (Then again I've never viewed those with Albinism as different.) it'll be a cool change!

Wouldn't brown come off a little strong? I mean I generally wear black clothing, but people I've talked to suggest brown would be too strong, maybe like a light blue or purple?

Either way, I've never dyed my hair. Always wanted to, but stylists keep saying that it's not possible, and even then I can't pick a colour.

I had a classmate with albinism back in grade school who was ethnic Han Chinese. Very odd to see the East Asian features combined with the fair hair, very pale skin tone and blue eyes albinism gave him. When we got to high school virtually everyone referred to him as "the white Chinese guy" as if he were mixed-race instead of having albinism. (It got to the point where only teachers who were taking roll call and the people who'd been in elementary school with him would ever use his actual name.)

One thing I noticed with my classmate was he was prone to severe acne breakouts (borderline cystic) in addition to the usual UV hazards. I was wondering if albinism made acne any better or worse for you? Assuming that you did get zits as a teenager along with the rest that puberty has to offer. ;P

I still get acne now! But that's a really interesting question that I'll definitely have to ask about, like the person who noticed that people with albinism tend to have curly hair. I'm pretty sure that albinism's only affect on the skin is lack of pigment (which is internal) and so oil production and such remain normal. But I'm not entire positive.

If you were offered the opportunity, would you go on a reality TV show or documentary? I think you really just have a lot to offer the general public. Like you said, you've done 16 AMAs and people are still asking questions! :)

Hope you're having a great day :)

After one AmA, someone PMed me from some studio in New York. They were apparently doing some like documentary series on people with hard lives or something like that and wanted to cast me. It could've just been a troll, like the time someone who was supposedly from Cracked PMed me asking me to write an article on albinism.

Anyway, I responded that my life isn't interesting enough to actually be featured in a documentary. I don't really... do anything :P I referred them to a friend I know in NYC who acts professionally.

I'm open to doing a film on albinism, or even just starring in a film. I wish we had as many positive portrays of albinism on film as we did negative. Or even a talk show. Actually someone invited me to be on their podcast but the Google Hangouts app flagged their call as spam and it never happened, I feel so bad :(

Oh God so many tangents! Okay, I would totally be game to be on TV, but more to answer questions rather than just be followed by cameras for a week, they wouldn't get anything good :P

Do you have any freckles? Or perhaps a birthmark? Edit: even though you've done so many of these, I am relatively new to reddit and I appreciate the opportunity to learn more!

Not that I can tell, but I do have some pigmented moles on my arm. Some people with albinism do have moles that can tan, and in general people with albinism produce some pigment, it's just very very little.

Thank you for stopping by, I do these frequently mainly because people may be new to Reddit or may have found out about one late, glad you were able to ask this go around :)

If you could choose to have been born without albinism, would you?

No.

How is it living so close to Italy?

It's nice, they have good pizza, and that pope guy, he has a cool hat!

Dude, how many AMA's have you done?

Has your albinism evolved into a final form or something, what's with the updates?

This is my 16th if I'm counting correctly.

I have a feeling that people who ask this question are just trolling, but for those genuinely curious:

1. Exposure. What if someone stumbled across my AmAs doing research or even 24 hours after I started? What if they're new to Reddit? The entirety of Reddit doesn't see every AmA every time, so there's always opportunities to ask questions when I do another one, as evidenced by people asking questions this time around, despite it being the 16th time. Also evidenced by the fact that people get mad about this being "like my 5th AmA." Ya'll are way off.

2. It's fun. I genuinely enjoy interacting with the Reddit community and answering all questions, from the serious to the silly. I'll be here for another 12 hours at least, regardless of how quickly or slowly new questions roll in. I wouldn't dedicate this much time and effort if it was something I hated.

How you seen the movie Powder?

Does wearing a hat help to protect your skin from the sun at all?

Do you/can you wear glasses to help with your vision issues, if no then why not?

Not yet.

Yes, if it was a wide-brimmed hat.

Only to a degree. Glasses help the common issues of nearsightedness, farsightedness, and/or astigmatism. People with albinism can have these too and that can be corrected with glasses. But we have a whole host of other things wrong with our eyes that glasses can't help/fix, so we'll never be able to get to 20/20. Those exact reasons are complicated and basically require an eye anatomy lecture to properly explain. I'm writing an ELI5 style article on the matter that I can use for future AmAs, but it's taking a while because again, this stuff is complicated.

How badly does the sun affect your skin? Is being in direct sunlight painful? How long can you stay outside before it becomes a problem?

I can't tan, so I'll sunburn if exposed to the sun for long enough. Because everyone has a different definition of a sunburn, it's difficult to say how long. I define a sunburn as red skin that actually hurts, and that will take an hour or so of full, straight on sun exposure. My skin does darken with sun exposure (most people with albinism develop some pigment, just very very little) and I guess you could classify that as a sunburn, but it doesn't hurt.

Being in the sun in general doesn't hurt and standard procedure is to just apply sunscreen before going out. I only do so if I'm going to be in the sun for long periods like an outdoor festival or the beach. If I'm just walking to the grocery store, I just walk really fast, try to stay in the shade, and it's never been a problem.

Do you go on r/Alex?

I never knew that sub existed! Though I never tried to look for it.

Personally, I think r/AlbinoAlex is better.

Have you ever seen Powder? If so, what are your thoughts?

Not personally, but people have pointed out... there are 7 characteristics of the "evil albino" character in film. Powder may come across as a good guy, but he's still bald, still has some form of power, still dies at the end of the film, and is portrayed by someone who doesn't actually have albinism.

But again, I've never personally seen the movie, so I can't pass any judgements.

Are you a fan of The Princess Bride with Mel Smith? Or do you feel misrepresented?

I haven't seen it, but some people have definitely slammed the depiction for just being another Hollywood evil albino.

Has having albinism influenced what you went as for Halloween?

Never, but people told me I'd make a perfect Joker—just gotta dye my hair green and get some lipstick.

Are there any questions that haven't been asked that you had hoped to answer?

Yeah, this one. /thread

I actually catalogue the kinds of questions asked and over 16 AmAs I think everything has been covered, though I wish more people would ask about treatment. I get very excited talking about the albinism research that I've participated in.

How's your love life?

Nonexistent.

Are you from Albania?

I am, it sucks. We don't get any of the cool American TV shows like Jersey Shore.

Do you intend to pass on albinism to another generation or remain /r/childfree?

I don't plan to have children but not because of albinism.