I have albinism—AmA

What is Albania like?

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

cool show

Jersey Shore.

Uhhh...

....yeah?

Fist pump.

GTL!

Dude, I'm not trying to baby you but you should really skip the T and stick with just GL.

Nah, I just get sunburned—that's the albino version of a tan.

There's a joke here about fake tan. Anyone?

I never thought about that, but yeah there should be!

Has anyone ever tried to catch you in a master ball, or shouted out "A SHINY HUMAN!"?

Never, surprisingly. Though some people do compare albinism to shiny pokemon, which are apparently super rare.

Fun somewhat related fact: I once dated a girl with albinism who was super into Pokemon.

If 2 people with albinism had a baby, would it be invisible?

It depends. Sometimes the baby will be invisible, sometimes it can read minds, sometimes it can fly. It just depends.

TIL the albino gen also improves your humor.

Apparently it does :)

You're just fantastic. Never change.

Thank you, I'll try not to :)

You look just like my friend Zane. You guys should meet and play pranks on people.

1) Have you ever considered toning your hair to make it pure white and call yourself the Ice Prince?

2) Being OCA4, did you ever experience Nystagmus? If so, do you still experience it? If you did, but no longer do, at what age did it begin to disappear?

3) Would you be willing to share your family background somewhat, as far as ethnicities go -- for science?

Does Zane have a sister with albinism? And live in Texas?

1. I wonder what would happen if I bleached my hair :P I've never considered changing my hair colour, but it's interesting because I'm always conflicted on whether or put down white or blonde for my hair colour. Everyone always says white, but all my medical records say light blonde.

2. I still experience nystagmus today, it's just far less noticeable than it was when I was young. People still notice it and sometimes they comment on it. Thankfully, I don't experience dizziness, headaches, or a misaligned null zone like some people with nystagmus do.

3. As far as I've been able to trace back my family is mostly Hispanic. About five generations or so lived in Mexico (and that's as far as I've been able to trace). My parents moved from Mexico to the United States and so myself and my siblings were all born here. It's interesting because OCA 4 is fairly common in Japanese populations and, well, we have no Japanese relatives :P

His place of residence is currently Oklahoma, but we met in Texas, which he frequents during convention season. Not sure if she has albinism, but she does have very blue eyes and blonde hair if I recall.

You wouldn't have to bleach your hair, mixing a small amount of purple dye with conditioner or using a toner of similar proportions would negate the yellow tone and probably cause it to appear snow white.

That's very interesting, I've never heard of OCA4 appearing in a person of non-Asian or European descent -- then again, this also isn't a subject I possess a lot of knowledge about... If it's safe to assume from your doctor's notes, you aren't aware of any other cases of albinism that have occurred in your family?

Thanks for the AMA, it's so interesting to gain some insight. B-)

Edit: He may have mentioned living in Texas when he was younger and moved to Oklahoma with his brother?

The reason I ask is that True Life did an episode on albinism like six years ago. And one of the people featured was a then-21 year old named Zane who lived in Texas and attended Waldorf College. My friend actually emailed me when they were casting for that episode, but I think I was too young—and probably wouldn't have been interesting enough to cast anyway.

I'll definitely try that one day. I've always wanted to experiment with my hair and do fun stuff—particularly when it's long so it looks better and I can just cut it if I don't like it.

I have a cousin with albinism who was born in Mexico and to this day still lives in Mexico, but she comes directly from our family line. I don't remember the exact path, but it was something like she's my mother's sister's daughter's something, I can look it up later. But she branches from the family tree. My great grandfather is also thought to have albinism just because of then generic description of white hair and blue eyes (which of course would be very very abnormal in an otherwise dark-skinned Hispanic line). Those are the only cases that we're aware of and despite having such a big family tree and so many relatives, there have been no new cases.

One of my friends keeps pushing me to try 23andme so I can get a breakdown of my ethnicities and hopefully uncover some more clues. It's intriguing, but as a college student I'm not eager to shell out $100 for something like that right now.

Dude, I'd buy you that shit.

I'll probably do it this summer, but thanks for offering :)

I'm just as interested in you having the results as you are. :)

I wonder how crazy they'll be.

Is it possible for people with albinism to dye their hair if they want?

Yes. I've gotten mixed answers as to whether or not the hair dye actually stays in (due to the lack of pigment in the hair to begin with). Some people say it's completely permanent, others say it slowly fades after a few weeks—but it's absolutely possible to dye a person with albinism's hair.

If you dyed your hair brown, you'd just look German.

Would that help or hurt me?

Do you have any desire to do so?

At some point. I want to do the research on it first, and then find a stylist who's willing to do it (Most of the stylists I've talked to said it's not possible to dye my hair and refused to do it).

Buy the cheap stuff at the pharmacist (test a dab of it on your skin first just in case you're allergic to it and then wait 20 minutes) then just rub it all over your hair, wait like half an hour, wash it off and if it doesn't work then all you've wasted is 8 bucks and maybe an hour of your time.

Good idea, I'll definitely look into it. The question now becomes: What colour?

Gold.
^{Always believe in your soul.}

Do they have gold hair dye?

What benefits come with having albinism?

Getting to board a plane before everyone else :)

What. Why is that?

For American Airlines at least (though I'm sure it's that way for most airlines) visual impairment is seen (pun intended) as a special need and therefore qualifies a person to pre-board an airplane—thus boarding before EVERYONE else (including first class).

Aha. The visual impairment part makes perfect sense. It sucks that you don't have the ability to drive. :/

In my state you would get free public transportation (bus, subway). Do you get that?

I get around fairly well without driving, and Uber/Lyft are fantastic and fairly inexpensive. Not being able to drive—at least where I live now—is less of an issue of getting places and more of an issue of flexibility. Must be nice to be able to hop in a car and go home at the end of a movie/concert—instead of having to shuffle to the nearest station and wait 15 minutes for the train.

With that said, self-driving cars are about five years away!

I've gotten various answers as to whether that's offered here, so I just haven't bothered to check. Public transit is fairly inexpensive here so I just take the hit. But I do know it's free for visually impaired in Colorado, Canada, NYC, Chicago, etc. My friends in Sydney get all their transit for free AND all cab rides are 50% off. I guess I just suck at picking blind friendly cities :P

Self driving cars!!! And yes that is great that you have a system. It is nice to hear that some places have it all worked out.

The U.S. is really behind when it comes to mass transit. NYC and D.C. and San Francisco are nice, but they have nothing on any major city in Europe or Asia. Regardless, their systems are pretty good. If it wasn't so expensive to live in a city with such amazing public transit, I totally would.

Brings up an interesting question. Why don't planes board from back to front?

Mythbusters tested this and found that back to front takes the longest time and has one of the lowest passenger satisfaction scores.

Also, according to flight attendants, people are stupid and put their bags in compartments closer to the front of the plane instead of in compartments, you know, right next to their own isles!!

I'm pretty sure people with disabilities can go first, and I guess albinism is technically a "disability"

OP responded that it is his visual impairment, not skin tone. Interesting that the mutation screws with your eyes like that.

It's definitely curious as to why a lack of pigmentation would affect eyesight so severely. It makes some sense to just leave it at that, but the truth is that scientists still don't know exactly what role pigmentation plays in vision—and how important it is. Nystagmus, one of the various things that goes wrong in our eyes, is muscle related and not pigment related. Regardless, scientists still aren't sure as to what exactly causes nystagmus.

It could have nothing to do with the actual lack of pigment, and the genes that code for vision ability may be on the same sequence as the one that codes for pigmentation. Just a guess

That's another possibility. We're also curious as to why there's such a huge variation in the amount of pigment different people with albinism develop. The genetics behind all this is fascinated, and we're just getting started.

Hey man, i have your condition too. Just wanted to drop by and say that you are not alone, I feel your pain too proof:http://imgur.com/MFY0SOx

Nifty! Especially love the shades.

Thanks for dropping by :)

[deleted]

Not tremendously. If I'm going to be outside in sunlight for extended periods (~45 minutes+) then I have to apply sunscreen. This usually only happens when I go to the beach or an outdoor party.

The visual limitations mean I often can't partake in a lot of outdoor activities like sports, watching sports, or of course tanning.

I don't want to sound stupid, but... why can't you play sports?

Vision. I can't track moving objects very well.

Can you read the thoughts of deer?

Yes, they keep thinking about those headlights.

Is that related to the albinism?

Yes, shitty depth perception.

This isn't a well thought out question, but could something like lasik help your vision? Can you still do stuff like gaming?

All LASIK does is reshape the cornea. The eye problems in albinism encompass the eye muscles, irides, fovea, retina, optic nerves, etc. There are so many different parts messed up :(

I can game if I get really really close to the screen. I play GTA on my iPad from time to time :)

What sort of visual limitations are we talking about?

I can go into more detail if you'd like, but mainly reduced visual acuity.

Is there some sort of wikipedia link for the visual impairment part?

Wikipedia may get some basics. I'm currently working on an article on the visual affects of albinism and, trust me, it's very long and confusing and it makes my head want to explode. It's difficult to do a TL;DR.

How badly is your vision affected, i.e. light sensitivity, night vision, etc...?

The main problems are reduced visual acuity (20/200) and nystagmus. A lot of people with albinism are fairly light sensitive but thankfully I'm not. The problems are caused by a wide variety of abnormalities in the eye, from a underdeveloped fovea to misrouting of the optic nerves.

Oh man... Can you get eye surgery or do the abnormalities prevent that?

Not at this time. There is one surgery that provides a small improvement (about half a line to a line, so 20/200 to 20/150 or 20/100), but only 50% of people who do it actually get a visual acuity improvement, and one snellen line isn't really worth it.

Man... Well, with the way technology and medical sciences progress, they may have something come up within your lifetime that will give you 20/20

Maybe. The biggest hurtle is that a lot of the things that go wrong do so in the womb, so once the child is born the damage has been done and you can't really fix it. There are also some promising drug trials that aim to improve pigment and therefore improve vision, but it'll be years before we have data on them.

Is it hereditary?

Yes.

You are one knowledgeable, well spoken motherfucker.

Fascinating AMA, especially loved your spiel about how to properly use sunscreen.

Anyway, thanks man. Hit me up if you ever wanna play some project1999.

Thank you, I try my best to make these fun—glad it's really successful!

When the dust settles, you'll have to teach me what that is and how to play it :)

Are you considering having biological children? I am an albino myself and am starting to plan a family but don't want to pass my albinism on.

Though I'm not dating at the moment, I would love to have children someday, either biological or adopted.

I've dated both normal girls and girls with albinism and the children discussion always varied, and was tougher with those who had albinism. It's this awkward seesaw because on one hand: Why would you want to have a child with albinism and have them suffer through the bullying and shitty vision and everything you had to go through? But on the other hand, if they have to go through that: Who better to have as parents than people who understand what the child is going through.

If you're concerned, DNA testing is available and fairly inexpensive compared to how much it was years ago. The odds of your partner carrying an albinism gene are rare, and even if your partner has albinism the odds of them having the same type are also rare. I know of couples with albinism whom have children with albinism because they have the same type, and some where they don't.

Thanks for your reply. The awkward seesaw is a great way to describe the situation!

It's certainly a tough decision to make and while I'm all aboard with having kids right now—I know I would deliberate on something like that for a very long time if I was married and had to make that call.

Socially, more and more people are coming to terms with who they are and are being accepted. Today's generation of people with albinism are a lot more comfortable with the condition compared to older people. Add onto that the technological advances and life for a person with albinism will be much easier in the future than it is today and was long ago. With that said, there's still going to be pain and struggle, so it's still a tough call to make.

I've been chastised for using the term "albino." But I see you've owned it. Please explain some of that to me. We freely refer to albino mice and gorillas and whatever, but humans typically take it as on offensive term. I'd like to hear more from both of you on this topic.

So, scientists generally use albino to refer to animals with albinism. For humans, it's generally preferred to use "person with albinism." In fact, a lot of people with special needs prefer the person first wording, like person with autism (at least I'm told). While that does add a sense of political correctness to it, it's just what's preferred by some people and organizations.

On a personal level, it depends on the person. Some people will openly use albino with you, others will tear you to pieces for using it. Therefore, I always use person with albinism just* to be on the safe side. Personally I don't care, but there are some people that definitely take offense to it.

Have you sufficiently checked your White privilege?

I still don't understand what that entails.

You didn't get the gift basket?

full of mayonnaise and a Michael Buble Greatest Hits CD?

Do your parents or siblings have this condition?

No.

Do you have any issues finding dates or have people been intimidated/offended by any offers? I've never seen an albino person where I live and can imagine some negative reactions in my region.

Because physical appearance plays a major role in whether or not we find someone attractive and therefore a candidate for dating—dating has been fairly difficult. Every once in a while you find someone who cares more about personality than looks, but it's rare.

I don't get the point here - how does albinism make you physically unattractive?

From what I have seen on your photos you look an average guy with pretty light hair and skin but that's about it. Is that actually enough to be seen as not attractive?

I would have thought its would be more like having blond hair in south america or something. (Friend of mine with long blonde hair and blue eyes went there and everyone wanted to be friend with her because she looked interesting) People being fascinated because they don't see it too often but more of a positive reaction?

For one you look different. And while there seems to be a stronger emphasis on standing out as you get older, it's more for the sense of being unique. Looking different isn't going to get you all the ladies.

It is, believe it or not.

I'm told Asian cultures adore light features, and that I would do very well over there :P Albinism nets me lots of questions and speculations. I have lots of friends and am very accepted, but it's definitely a hinderance in the dating department.

I'm sorry I'm a dude. I'd date the tar out of an albino lady, all other things being equal.

So would I :P

I'll refer you to single ones if you do the same for me. :P

Wingman?

Even though it's probably a little lopsided since you have an 'in' and I've never met anyone with albinism, heck yes.

Oh I'll get you in*, just come to our next conference—albino chicks everywhere :)

I think you need to just find the right person. My girlfriend has albinism as well and I think she's incredibly pretty. Very unique of course, but I love pale skin as is and between the violet eyes and white hair, well. I consider myself a lucky lady!

I'm trying to figure out a polite way to say "Girls have it easier." Dating is tough for girls with albinism, but it's definitely a lot easier for them to get dates, just because generally boys chase girls. Ingrid Michaelson even wrote a song about that!!

But yeah, it does boil down to finding the right person and... still looking!

What colour are your eyes? I can't quite tell from the pictures, but my guess is blue?

My medical record says "hazel" but as you'll see, they're a mix of colours:

https://www.flickr.com/photos/applealexc/8664834598/

They're beautiful!

Thank you :)

There is a kid at my school with Albinism, and he has Purple eyes!

He should dye his hair purple to complete the look :P

It looks like nebula

I wonder how much astronomer pussy I could get.

Dunno, but try opening with "Yo girl, let me tap that asteroid!" or possibly, "let me be the milk to your Milkyway"

Genius! I owe you for this.

Why is there a upside down piece of bread in this picture?

...where?

It kinda looks like a reflection of the bulb in your eyes is an upside down bread. Not literally a piece of bread haha

That looks more like a bell, or the Snapchat logo—but then again I'm blind so...

The light reflection on your eye to right of the pupil resembles an upside down piece of bread.

That looks more like a bell, or the Snapchat logo—but then again I'm blind so...

But surely you can see why kids love cinnamon toast crunch?

I see why, yet I don't understand why...

What do you have against Robert Langdon?

He wouldn't take a selfie with me, that fuck!

Thanks for taking it in jest. I'm not sure if you would know, but where does the "albino people have red eyes" thing come from? Do a majority of those with albinism have red eyes? If so what about your case makes you have hazel (or whatever) colored eyes?

I actually don't know who Robert Langdon is :P I just picked something random to be pissed about.

I think the red eye thing comes primarily from the fact that most animals with albinism have red eyes. Also when you shine light into someone's eyes, it can sometimes bypass the iris and illuminate the blood vessels in the back of the retina—creating the red eye effect we see in photography. The multi flashes that are used to avoid this work by getting the pupils to slightly shrink, and pairing that with the pigment in the irides you get a reduction in red eye. People with albinism have little to no pigment in their irides, so... Beyond all that, the majority of Hollywood movies, cartoons, and other mass media sources always portray people with albinism as having red eyes.

In reality, almost no one with albinism has red eyes—unless they're under special lightning conditions. The majority of people with albinism have blue eyes, perhaps a hint of violet.

I happen to have very little pigmentation in general, but some of the little I do have happens to be in my irides of all places. This results in my not being light sensitive and in the blue/green/yellow mix you see in my eyes. I'm sure I'm still quite susceptible to the red eye effect, but I don't have just standard blue eyes like most people with albinism (though I'm told blue eyes are highly preferred, so maybe I didn't luck out there).

Have an upvote for using the correct plural of iris.

Thanks! Sweet sweet karma! :)

Interesting. And Robert Langdon is the main character in the Da Vinci Code.

I've never read the Da Vinci Code, nor have I seen the movie :( I'm more interested in the actual code and that aspect of the whole thing, but the Da Vinci Code is definitely one of the most referenced works that involves a person with albinism.

So, does the carpet match the drapes?

Yes.

[deleted]

Like sexy hot or interesting hot?

Does it hurt?

Only when I get sunburned.

Heeey sunburns hurt me too maybe we're like related or something.

You wanna meet up later and compare family trees?

What kind of sunscreen(s) do you use? Do you mainly stick with physical or do chemical or combination?

Although everyone (including people with albinism) only need to use SPF 30, I have several bottles of SPF 100 for humour purposes. There's also this Australia sunscreen called Blue Lizard that apparently lasts all day (compared to normal sunscreen that needs to be reapplied every two hours). I've never used it, but it's bloody expensive!

I just use regular lotion-style sunscreen. Spray sunscreen isn't generally recommended.

Ginger here, SPF 100 didn't work too hot at myrtle Beach, excluding water contact. Family laughed. They stopped laughing when one got melanoma.

SPF 30 blocks 97% of UV rays, SPF 100 should block like 99.99999998% or so of UV rays. It works,

Sunscreens fails to work for some people because they don't apply enough. Sunscreen should leave a thin layer on your skin that absorbs in 15 or so minutes. The golden rule is 1 ounce = 1 shotglass = 1 adult. Most people apply 25 - 50% of that. You should also reapply every two hours, every 40 minutes if in water, and immediately after you towel off.

People who say sunscreen doesn't work aren't applying enough and aren't reapplying often enough.

Blue Lizard is fantastic. I use it because in the summer I'm out on/in the water a lot, and I'm forgetful and don't think to reapply often. Sure, it's more expensive, but realistically I'm spending about the same since I'd have to reapply normal sunscreen so much more often (every couple hours vs. ~ every time I get out of the water)

I'm sure it's very well worth it to a lot of people. I don't apply sunscreen that often and I'm slightly skeptical of how long it claims it last, but I'm sure it's a fantastic sunscreen and I still recommend it to people who ask :)

Cool thanks for answering! I've heard of blue lizard and it's on my list of sunscreens to try. I'm always looking for different ones to try :)

There's nothing that really makes one sunscreen better than another. As long as it's broad spectrum and at least SPF 30 (though some recommend SPF 50), then you're good. There are some chemicals that work slightly better than others, but the difference is almost negligible.

I just picked the highest SPF I could find because I wanted to be funny :P So I have Coppertone, but Banana Boat was always great.

What does your penis look like? I've never seen an albino penis before.

Like this

Clicked to see a dick, also scored a butt.

Two for one :)

There is a rumor that the writers of Arrested Development planned to out Tobias as an albino african man with a extra super rare form that allowed his hair and eyes to be "normal". Do you think this is possible based on your research? (I sure you have some research completed to some extent.)

Not really. There are basically two types of albinism. Ocular albinism, which only affects the eyes and sometimes (though not always) results in lighter pigmentation compared to your parents, but you'd still have plenty of pigment. Oculocutaneous albinism, which is what I have, affects both the hair and the eyes. The amount of pigment is extremely variable from nonexistent to plentiful, yet lighter than the family. This extreme variation lead to researchers asking: How do we diagnose someone with albinism if it's possible for them to have pigment and look almost like their family?

Thus, today an albinism diagnosis is made via DNA testing and eye testing, and not just by looking at someone and saying yes or no.

Getting back to your question, albinism by definition is a lack of pigment and generally affects the eyes and skin. So to have normal eyes and normal skin pigmentation would mean to not have albinism :P They could've totally pulled off ocular albinism and just said that his vision was only slightly impaired, though.

Do you hate having it?

Some days, it just depends. While it sure would be nice to be able to drive and, well, see! I'm happy with who I am and the incredible places albinism has taken me.

You can read minds?!

I can. Sadly, it's a shitty superpower. You would think getting inside people's minds would reveal all kinds of awesome secrets. Nope! People think about the most random, ridiculous, useless shit. I stopped reading minds after hearing someone think about cats for the billionth time.

I know you can read my thoughts Alex.

Meow, meow, meow, meow, meow, meow, meow, meow, meow, meow, meow, meow, meow, meow, meow.

Amy from Amy's Baking Company? Is that you?

Is it true that I shouldn't trust whitey?

It's true, never trust the man. He and the establishment are always trying to keep us down.

How is your peripheral vision (I have albinism and my eyesight is 20/600 with pretty bad tunnel vision)?

I don't remember what the results of my peripheral vision tests were, but I definitely remember doing it. It's that stupid dome there you have to track the green light that comes from all different directions. I'm pretty sure I failed it miserably. If my normal vision sucks, what are the odds my peripheral vision will be good? :P It sucks especially hard because I can't casually eye cute girls from my peripheral vision—I'm stuck with staring directly :(

My uncorrected visual acuity is 20/400, 20/200 with the best possible correction. Thankfully, I can get perfect 20/20 with a monocular!

Do you feel like albinism is a social identity for you as well as a condition you have? For example, some people who belong to the Deaf movement have the condition of deafness but also find community in it. Do you identify or think at all about people with albinism who live in places where they are persecuted for it, like in East Africa?

Because the condition is so rare, you'll be hard pressed to find others with it outside of major cities. I know of around 5 or so people in the DFW metroplex that have albinism. I'm sure there are more, but even if there are like 30, that's out of 6 million people.

However, there's definitely a community! We communicate online and attend biennial conferences and various other events throughout the year. Some of these events do include a focus on the people with albinism in East Africa, and NOAH and the organizations that help those people are very well connected.

I used to work with a pair of female twins with albinism in Ohio a few years ago. I don't remember their names, but I didn't actually know there were two of them until I greeted the wrong one and she gave me a death glare. I'm not really sure why I wrote this.

It happens. I have a friend in a small town in Georgia that has like 7 people with albinism. When I was growing up, the nearest person with albinism was about an hour and a half away.

Also interesting: I know a family with twin girls where one girl has albinism and the other doesn't.

One does but the other doesn't? Genetics is so cool.

Right. They're twins, same birthday, same parent, exactly like any other pair of twins, except one of them has albinism and the other does not.

Oh hey I remember you from whenever ago. How's things?

Also I love your hair...

Probably from the 20+ other albinism AmAs I've done :P Things are pretty swell :)

Which hair? The nice trimmed hair or the wild bushy hair?

Both, it's a nice colour. And I think it was your last one, if I recall I showed you my own albino character Dawn.

Oh yes now I remember!! How has that character come along? Any new stories?

What race are you?

White.

[deleted]

Whenever I get another thing asking for race, I'll select other and enter that.

Didn't you say your family was from Mexico? Or am I missing a joke. Whoosh?

My race is white, my ethnicity is Hispanic.

Does moonlight hurt?

I actually remember haring something about moon burns at some point :P While the moon is lit by the sun, moonlight doesn't affect anything :)

Are you in a UK rap battle league?

I'm not a rapper.

But I would LOVE to recreate this scene with nothing but people with albinism.

I'm interested in the accommodations that you receive(d) during school specifically. My son has a rare eye condition that, in his particular case, has given him a similar acuity as yourself. He's young and is just beginning his endeavor through the school system. He uses an acrobat now and finds it pretty helpful. Any other tips or tricks someone that's been through it could share? Also, do you find it difficult to read social cues and facial expressions? With our sons impairment, he can't see very far away and is extremely photophobic making it difficult to play with friends on the playground, etc. Would love any advice you could give for me to pass on. Thanks and best of luck to you.

So I grew up in a small town in a rural part of California, so we didn't have a lot of resources even at the district level. The district's sole VI person would change every year, sometimes every semester!! It became difficult for the next person to pick up the pieces. So throughout my school years I had large print textbooks and an old dome magnifier and... that was it, really.

When I finished high school and started college I consulted with a private orthoptist and got everything I have now. Reading glasses, monoculars, magnifiers, etc. So let's go over accommodations:

Reading: Everyone has a preference for how they like to read books. There's just a regular textbook (with plenty of squinting, it's definitely possible!), regular textbook with a dome or handheld magnifier, regular textbook and a CCTV, large print textbook, audio textbook, digital textbook, etc. There are lots of options so it's important to present a student with each one and let them pick which one they like the best. I prefer digital textbooks on my iPad, but some of my friends prefer audiobooks.

Class notes: Again there are several options. Just raw listening, getting a printed copy of PowerPoint slides, using a monocular, using bioptics, using a camera connected to a laptop and zooming to the board. If teachers use a "smart board," there's a program where you can share the screen from that board to a tablet. In high school I was stuck with just listening and taking notes as best I could, but now I use a monocular. Some professors would also print out the notes in advance, it just depends. Again, present all options and see what he likes.

Photophobia is also a common problem in albinism and dark tinted sunglasses outdoors seem to help the best. Indoors, hats and sunglasses could help. I've also seen people put these sort of silverish screens over fluorescent lights to make them less bright, and others who put blue tarps over them. Sadly there's not much we can do about not noticing facial expressions or body language—that's something I struggle with a lot. I tend to listen for tones and much more apparent body language like crossed arms, etc.

The biggest and most important thing to teach him is to be an advocate for his own needs. If there's something that's bothering him, or something that he's struggling with, he should speak up about it and a solution can be found. I have a friend with albinism who's a senior in high school and she's LONG been a huge advocate for people with special needs speaking up for themselves—she herself takes such a commanding role in her education plan and accommodations it's extremely impressive. When I was in high school I never talked about my needs. If a teacher didn't print out my notes I didn't say anything. I don't know, maybe I just felt like I was bothering them, I just didn't speak up. But it's very important to do so.

That's a lot for one answer, but please feel free to ask follow up questions, I'm happy to help :)

[deleted]

On several occasions I've overheard classmates say "This class is so stressful! I'm getting grey hairs!" To which I respond "How do you think I feel?"

[deleted]

So does this prove procrastination is genetic?

[deleted]

Eating lots of food, apparently.

Still answering questions? If so, have you thought of joining the X-Men?

Absolutely!!

Never, would they let me join?

Did you love the albino scene in The Heat when Melissa McCarthy insults the dea cop repeatedly?

I haven't seen it, but I really want to! Everyone slammed that movie for some reason—mainly because they get pissed off anyone anyone with albinism is portrayed in a film. However, it looked funny from the trailer—I just never got around to watching it.

What jokes or comments do you get really fed up of hearing?

Jokes are always good fun, but what I just get sick of is hearing people say "You're not albino, you don't have red eyes." That misconception really needs to die.

What's the biggest challenge brought on by your condition?

The visual impairment is definitely the most challenging part. Not being able to drive, or see the blackboard in class, or pick up body language, or read name tags :(

What continent would you probably never consider visiting and why is it Africa? :(

I probably wouldn't visit Antarctica because I don't do well with the cold.

Are you working or in school right now? Does your albinism pose any difficulties to you in either of these fields?

I am and not really. Thanks to my monocular and reading glasses and getting my textbooks digitally, I'm able to avoid a lot of the problems. The only thing that's really annoying is if a professor rushes through slides, as it takes me longer to take notes.

What are you studying?

Psychology.

Based on your life experiences, would you choose to be albino or not, if given a choice?

I would choose to have albinism. It's tough sometimes, but I love all the places it's taken me and all the wonderful experiences I've had.

I haven't had a chance to ask too many people, but it's an interesting question that certainly riles up a lot of emotional pain and struggle. I know some people who are happy with it, I know others who would turn normal in a heartbeat if they could.

There's a current clinical trial for a drug that aims to increase pigmentation in people with albinism. It wouldn't "cure" them, per se, but it could increase hair and skin pigmentation and make people look just a little more normal. There was lots of discussion on the ethics of this and whether someone would take to take a drug that could potentially make them normal.

Hello. Have you ever pulled any tricks or jokes that are only feasible due to your albinism?

I can't think of any off the top of my head, but it's fun to reference to and make jokes about!

Do you have any feelings regarding popular fictional representations of albinos? Not to lead you into an answer, but very often albinos tend to be antagonists or at least morally ambiguous.

I personally don't care, but I wish there were movies that showed people with albinism in a good light. However, lots of people make a big fuss about it and write to the studios complaining.

The evil albino thing gets old after a while, but no one is boycotting those movies so...

What is the worst experience you had to put up with due to your albinism?

When I was trying to get a lab order form so I could get tested for HPS, the doctor refused to issue one because he didn't believe I had albinism. I have OCA 1, so it's white skin, hair, everything. But no, he wanted to see paperwork that said I have albinism: I wasn't able to convince him, and I walked out without the form. When I went back to my regular doctor (who's super awesome and is actually actively researching albinism) I told him the story. He stared at me and asked "What planet is he from?" Notwithstanding, from that day forward I take my entire medical history to every doctor's appointment—including five letters from five different doctors confirming OCA. Never again will a doctor be able to doubt me like that.

Do you love the Venture bros, or hate the Venture bros?

I've never seen it :( But it looks cool!

How many AMAs are you going to do?

As many as I can squeeze in until I die!