Hi Reddit!

My name is Alex, and I have albinism. I’m back for another exciting AmA!

Proof

M E T A

DNA test results

So go ahead, ask me anything.

Comments: 1590 • Responses: 137  • Date: 

alisdairejay964 karma

What's the most common misconception about your condition that people get wrong?

AlbinoAlex1714 karma

That all people with albinism have red eyes. Most people with albinism have blue eyes. Maybe a hint of violet, but not red.

ihave12dogs788 karma

do people date you because of your albinism (finding you different than others or 'cool') and have people you've dated been scared that your children would have a chance of being albino too?

AlbinoAlex875 karma

Not that I'm aware of. I don't recall that ever coming up when I dated people without albinism but I've dated a few people with albinism and it's certainly something we thought about—but more the question of "Would you want to have a child with albinism?" The actual genetics behind it are pretty straightforward.

OCELLARIS_CLOWNING265 karma

Didn't the genetic test say your albinism is due to a novel frameshift mutation in a certain gene though? If the other albino partner had their albinism linked to a different gene, presumably the child wouldn't be albino. Unless you both also had a variety of other mutations.

AlbinoAlex370 karma

Yes, she'd have to have or be a carrier for the same type of albinism, which my genetic counselor deemed unlikely considering that OCA 4 has a prevalence of 1 in 100,000, which yields a carrier rate of 1 in 158).

I know several couples with albinism and I've always wanted to ask how they felt about this. I know none of them would go out of their way to get tested, genetic testing is fairly expensive, but I wonder how they feel not knowing whether they both have the same type of albinism.

BaldingEwok151 karma

They could feel that albinos are genetically superior and are doing their part to take over the world

AlbinoAlex474 karma

We couldn't take over the world because we'd never be able to do battle during the day!

Superdanger261 karma

And it wouldn't be feasible to fight at night because you'd be spotted by the enemy like a polar bear on asphalt.

AlbinoAlex233 karma

Unless there was snow on the ground....

WhiskeysFault166 karma

Canada's practically yours already :)

AlbinoAlex114 karma

I always joked that when we went to war with Russia, I would be stationed in Alaska, naked, camouflaged in the snow, taking sniper shots. You know, back when we didn't have tensions with Russia and North Korea...

st_owly646 karma

Do either or both your parents have albinism or are they just carriers?

AlbinoAlex637 karma

Just carriers.

truthislife125 karma

Have you ever gone into your family history to see if anyone else has had it?

AlbinoAlex623 karma

Great grandfather was suspected of having it. No pictures or DNA, but when someone has white hair, pale skin, and blue eyes in an isolated Mexican village full of dark-skinned people, it's probably albinism. I also have two cousins on my mother's side who have it. Can't remember their placement on the tree, though.

eatcitrus93 karma

When did they find out you would have albinism?

During pregnancy, at birth, or is it something you can't tell right at birth?

Do you have relatives who have albinism?

AlbinoAlex155 karma

I never actually asked about the first months so I don't know. I remember them once saying they were surprised and I doubt they knew in advance that I would have albinism or what albinism even was.

I'm not sure if you can tell during pregnancy now a days, but you can definitely tell something is off during birth. Doctors could easily make an on-the-fly diagnosis of albinism but I'd personally wait for a genetic or ophthalmic consult before accepting it.

I have two cousins with albinism on my mother's side.

tellMyBossHesWrong610 karma

Does sunscreen even help?

AlbinoAlex876 karma

Yes, tremendously so. But you have to be sure to apply it thoroughly and in a timely manner (every two hours usually).

tellMyBossHesWrong259 karma

Have you ever had a sunburn so bad that it looked like a 3rd degree burn?
Edit: I meant 1st degree...

AlbinoAlex406 karma

I don't think I've ever had one that actually blistered, just skin peeling. Either way, sunburns suck!

tellMyBossHesWrong192 karma

As a fellow pale person, I feels for ya! I'm not albino, but I burn within mins and people don't believe me until they see me the next day.

Have you ever dyed your hair or worn contacts?

AlbinoAlex229 karma

Never dyed my hair but always wanted to! Also never tried contacts, I imagine it would be a nightmare trying to get those tiny things on your eyeball (considering my poor vision). Ophthalmologist did recommend I try them, though.

bonemot157 karma

I was afraid of trying to get them in, but it really becomes second nature with a little practice. There are lighter, thinner daily use options that you could try. Good luck!

AlbinoAlex86 karma

Have you ever forgotten to take them out when going to sleep?

Karsfarnars98 karma

My husband recently left his in overnight and ended up with an ulcer on his eye. Never forget!

AlbinoAlex87 karma

I wonder how many people do forget, just like people forget that they have glasses or a watch on. These things become so natural to us that we forget they're even there!

UnfairBanana15 karma

Regular contact-wearer here. I sleep in mine every night, change em once a month. I usually don't even notice they're in, and if they do start to bug me I pop em out and clean em.

Every eye doc will tell you something different about sleeping in your contacts. Most say it's bad for you, but I've also met quite a few who say it's fine (or at least, that I'm fine...maybe some people's eyes are just different)

I started by taking them out every night, but I'd go spend nights with my friends and forget to bring contact stuff. When I woke up, it'd be kinda unpleasant but not seriously irritating. Over time, it became less and less of an issue, and now my eyes don't care

AlbinoAlex9 karma

Thanks for the feedback! Would you say there are any more benefits to contacts besides convenience? It's like, I have AirPods, and people ask me all the time if they're worth it. The sound quality is the same as EarPods, I just paid $160 to not have to deal with wires. In the same vein, do contacts just eliminate the need to deal with glasses?

thephantom149213 karma

My aunt used to leave them for a week...

... she's stupid.

AlbinoAlex26 karma

What other things did she do?

suckbothmydicks14 karma

My wife is almost blind and she can easily take her contacts in and out.

AlbinoAlex54 karma

There's also pendular nystagmus, it's this rapid involuntary eye movement that people with albinism have. Outwardly, it appears that we're scanning the room but in reality we're staring right at you. I can't imagine the hell of trying to get my eyes steady enough to put in contacts :P

But concerns aside, I'm definitely open to trying them one day.

JetStreamWolf122 karma

You could rock some red hair

AlbinoAlex3 karma

But what shade of red?

BeagleAteMyLunch31 karma

You are probably an expert in sunscreen, which brand do you recomend for somone like me who sweats like a pig after using it.

AlbinoAlex109 karma

I'm not, actually. r/skincareaddiction is where I went to get sunscreen advice. The FDA banned advertising sunscreens as "sweat proof" or "water proof" in 2011, best they can do now is water resistant for 40 - 80 minutes. I'd lean towards something meant for sports, but otherwise constant sweating just means constant applications. Though, the worse part is when it gets into your eyes :(

Sence41 karma

As a surfer I can confirm. Shit burns yo

AlbinoAlex35 karma

Is it worse than saltwater?

Sleepless_Devil487 karma

Are you incapable of getting something like lasik to correct your vision problems?

AlbinoAlex1816 karma

Yes, for a variety of reasons. To make it simple, LASIK only changes the shape of the front of the eye (cornea) and the vision problems in albinism are in the back of the eye. It's like trying to fix a broken camera by swapping out the lens.

LeoLuvsLola427 karma

how likely are your children to inherit it?

AlbinoAlex1098 karma

If I have children with someone who doesn't have albinism, the chances are 50% if the person carries the gene for albinism, and 0% if they do not carry the gene for albinism.

If I have children with someone who does have albinism, the chances are 100% (Yes, 100%) if we both have the SAME TYPE of albinism, and 0% if we have different types of albinism (however, the children would be carriers for both types of albinism).

LeoLuvsLola291 karma

wow! interesting. how many types are there and are they visually discernible?

AlbinoAlex380 karma

There are currently seven known types but OCA 1A (often called "complete albinism") is the only type that can really be discerned phenotypically. Each type has such a variability in phenotype that genetic testing is the only way to be sure.

tigerrhett167 karma

You mentioned in another comment that most people with albinism actually have blue eyes as oppose to red. Are certain types of albinism more likely to result in red eyes than others?

AlbinoAlex112 karma

None would. The red comes from shining a light in the eye and the light reflecting off the red blood vessels in the back of the retina, making everything appear red. In normal eyes, there's loads of pigment in the retina that would absorb the light, leading to a dark brown reflection.

But under normal conditions and normal lighting, the irides of most people with albinism will be blue.

blacksun20127 karma

Is this why a camera with bright flash can cause red eyes in photos?

AlbinoAlex19 karma

Exactly! So part of the red eye flash is several flashes before the picture to try to make the people's pupils smaller so less light enters and there's less of a red eye.

Lordofsax56 karma

If your partner didn't outwardly show signs of albinism would you want to go through genetic tests to see how likely it is your children inherit your albinism?

AlbinoAlex119 karma

If you are only a carrier you wouldn't show any outward signs. There's a 50% chance that one or more of my siblings are carriers, we'll probably never know if/which one. If they had albinism, it'd be pretty easy to diagnose. There's a wide range in presentation (e.g. pigmentation) but there's no hiding the eye problems.

With that said, genetic testing would be up to my partner, but I would not pressure them to do so. I already have my genetic testing, so it would be up to them if they'd like to as well.

miosgoldenchance27 karma

Is the genetic testing reasonably accessible and affordable?

Also - while I totally understand you not wanting to pressure a partner to undergo testing, would you prefer that they did if they had no problem with it?

AlbinoAlex58 karma

It's kinda accessible, there are commercial labs that can do it. How much it costs really depends on who's paying, but it can be expensive. A geneticist we asked quoted something like $600 - $900 to test for a single gene (i.e. one type of albinism) and there are seven types of albinism.

I don't know, I just like to keep giving the answer that I'll cross that bridge when I come to it. I kinda like surprises, like I'd be that person that didn't want to know the gender of the baby until birth. But obviously, stuff like this is a joint decision, so I'll cross that bridge when I come to it.

miosgoldenchance22 karma

Wow, I wouldn't have guessed that comprehensive testing would be that expensive!

And yeah that makes sense... I'm kind of a control freak so I'd want to know, but I realize it's different for everyone! I read through a fair amount of your AMA and had no idea about the vision problems related to albinism - I guess my question with genetic testing is if you knew that your children would be affected, would that be enough for you to look into other options or would you be okay with passing that on?

I hope that's not rude, I'm just very curious!

AlbinoAlex47 karma

There are really good arguments to both sides. On one hand, why would you want to have a child with albinism? A child who will struggle, probably be bullied, and in general encounter a lot of difficulties? At the same time, as a person with albinism having a child with albinism would mean I could understand exactly what they're going through. One of the best things about talking to other people with albinism is that connection, that spark, that deep understanding of all the nuances that come along with it. I think that would make a parent/child bond that much stronger, and that much more special. In the end, I always just say that I'll cross that bridge when I come to it, because I genuinely can't take a stance on the matter.

Stimmolation242 karma

How is your vision?

AlbinoAlex484 karma

Terrible. 20/400 uncorrected and around 20/150 or so with the best possible correction. Good enough to get around independently but still too terrible to, say, see the board in class or watch TV without having to get super close.

Shotdownm120 karma

Do you ever feel confused due to your eyesight being bad? I feel confused sometimes, not sure if it is due to brain fog or due to my eyesight being a bit bad

AlbinoAlex224 karma

Not in general but I've had way too many instances of staring at something for a long time trying to figure out what it was. Normally, I'll eventually take a picture and zoom in so I can see it in more detail.

MyParentsAre_Cousins76 karma

I interned in the Capitol building this past fall and I remember one guy who I assumed had albinism. He would always walk with his phone like 2 inches from his face, I'm assuming because of his poor eyesight.

AlbinoAlex166 karma

Oh definitely, some people hold theirs closer than others, but we all do. One of my favourite stories is when we were at an albinism conference and we decided to go to the bar next to the hotel. There are like four people with their phones super close their face and the person with us was super ecstatic to see someone else doing that in public.

MyParentsAre_Cousins56 karma

Considering how ridiculous a group looks when everyone is on their phone, I'd imagine that would look pretty funny.

Now that begs the questions, how close is your face to the computer screen replying to these questions? Or alternatively, how high is the zoom set?

AlbinoAlex57 karma

About seven inches away or so, definitely close enough to do your back in after a while but fat enough that my face isn't pressed against the screen. I also have the entire desktop zoomed in. Not sure to what strength but I usually size it so that an unexpanded YouTube video will fill the screen.

accentadroite_bitch206 karma

Based on your name in the proof, it seems like you're probably Hispanic. Did anyone in your family have any suspicions of infidelity when you came out shockingly light-skinned/haired? Does anyone ever question your ethnicity as a result?

AlbinoAlex461 karma

From what I remember, everyone was shocked, but no one suspected or accused anyone of infidelity. I was clinically diagnosed by geneticists at about four months old, who made it clear that it was genetic and not infidelity.

Everyone just assumes I'm another white guy. I speak flawless, unaccented English and introduce myself as Alex. It's only when I disclose that I'm Hispanic or just start speaking Spanish that they find out (and sometimes freak out).

Silver_kitty145 karma

My father is also a Latino with albinism and has the same experience and has fun surprising people with his Spanish fluency. He used to teach at a school with a large Latino population and the students weren't expecting Mr. [obviously Latino last name] to be a man who looks like Colonel Sanders. They'd let down their guard, not expecting him to be fluent so they'd chat in Spanish before classes and he would enjoy just jumping into a conversation before class sometime in the first weeks.

AlbinoAlex152 karma

I love those AskReddit threads about people who overhear conversations in a foreign language that it's assumed the person does not speak. It's fun just listening in on Spanish conversations, especially when older Mexican ladies comment on how white my hair is.

jeyre20378 karma

Haha I am pretty white looking so people don't assume I am Latina. One time I was on the bus in the white part of town and the only two Latina ladies on the bus started telling really perverted jokes. I chuckled and they were so embarrassed that I understood them.

AlbinoAlex83 karma

You can't just share that story without sharing the perverted jokes!

ExplodingToasterOven4 karma

"White Privilege" gotta love it. ;) Until the sun comes out, and the burning starts. :D Luckily most people in Seattle have umbrellas, so... ;)

AlbinoAlex9 karma

I thought only tourists used umbrellas in Seattle, and the locals just got wet?

I've been to Seattle and absolutely loved it. Culture, location, weather, atmosphere, public transit, etc. Shame the cost of living is skyrocketing.

sc2assie200 karma

do you go to albino conventions or are they even a thing?

AlbinoAlex289 karma

They are a thing, held every two years in the United States, Australia, and England. I've been to three but I last went in 2014.

itssnowinggg70 karma

How was it like at the conventions, and what typically goes on there?

AlbinoAlex308 karma

Amazing. One of my friends summed it up best by saying "For the first time in my life, I felt normal." They normally last three days and have a variety of sessions covering things like genetics, skin care, careers for people with albinism, the situation in Africa, parenting seminars, lots of sessions on visual aids, etc. There are also opportunities in the evenings to go out as groups and do different activities. But the entire conference is mainly about hanging out with other people with albinism and making connections.

tombombtombomb133 karma

What's "the situation in Africa"?

When I was in the Congo (DRC), sex with an albino was what a witchdoctor would sometimes recommend to lift a curse. This leads to a lot of rape, sex slavery, and prostitution. Is that "the situation" you speak of, or is there more vileness to be heard about it?

AlbinoAlex300 karma

That, or sex with an albino woman cures HIV.

But in Tanzania, those witchdoctors believe that we have magical powers, and our body parts are used to make magic potions that will make those who drink them rich. Many people with albinism are killed, or at the least have limbs cut off.

bit_herder97 karma

wow

AlbinoAlex131 karma

It's pretty terrifying.

tombombtombomb40 karma

Jesus fuck

AlbinoAlex79 karma

It's fucking awful, makes you really really appreciate living in the States.

DannyDawg20 karma

Not trying to be a dick but could you make money by like... selling your hair and shipping it?

AlbinoAlex11 karma

I doubt it.

ImagineHeart174 karma

Did you ever think about dying your hair? I'd ask if you ever tried to get a tan, but I don't think that's a good idea.

AlbinoAlex273 karma

I've always wanted to, but I've never gotten around to it. I also wanted to do a cool colour like blue but my workplace prohibits unnatural hair colours.

ImagineHeart108 karma

Thanks for answering, Alex. I thought of black dye when I asked the question; you could look like a real-life vampire with that and red contacts.

If I may ask another question, what kind of work do you do?

AlbinoAlex149 karma

I mean it goes both ways. Black/brown would definitely facilitate a more "normal" phenotype but... I feel those colours would come off too strong. Something like a blue or purple would be bold but light.

I'm currently a full-time student.

Amadacius110 karma

"My workplace prohibits it"

Whats your work.

"fulltime student"

oh so your school prohibits it?

"no my work."

AlbinoAlex96 karma

Oh shit, I just noticed that! Well I mean, I guess it encourages people to read through the entire AmA!

Rando_gabby44 karma

I mean that makes sense to me. You don't have to bleach first so the colour would take well. It's rather convenient

AlbinoAlex63 karma

I always like to ask if the stylists would charge me less since they wouldn't have to go through the bleaching process, though many people seem to prefer to dye their hair at home.

scorpiobutt47 karma

As a hairstylist-- yes, we would charge less :). Since yours would just be a single process, not a double. However if you wanted to go to a natural brown color it would probably cost more due to the fact we would have to fill your hair with the missing pigment then apply your desired color.

AlbinoAlex41 karma

How would you go about filling in the missing pigment?

scorpiobutt73 karma

Many different ways. Say, you're technically a level 9/10, the lightest hair can be. If you wanted to be a level 5 Brown, I'd probably fill you with either color or a toner, whichever takes on your hair best. Probably a level 7 NW (neutral warm) you need the red pigment back in your hair in order for the color to stick and not fade muddy. I'd then apply a level 5 color, and we would decide together if you would like warmer tones, neutral, or cooler tones.

For reference, A level 1 is the darkest black, Level 10 is the lightest blonde. If you were to put red hair color on your hair, it would wash out horrifically pink. That's why you have to fill it in. For example, take the foundation of a house. Your natural hair is the foundation, the filler is the walls and the support beams, and the hair color is the roof.

AlbinoAlex48 karma

So... where are you located so I can some in and get my hair dyed?

Benoftheflies34 karma

What school prohibits unnatural hair colors?

AlbinoAlex49 karma

Work, actually.

FrancisCastiglione1226 karma

Publix?

AlbinoAlex81 karma

A hospital, they have pretty strict rules. We can't even wear jeans :(

losian8 karma

prohibits unnatural hair colours.

I feel honestly a bit bad but I couldn't help but find this a little funny.. I mean, I kinda find it asinine for workplaces to mandate that much of their employees, but moreso it's funny because like..

Okay, so, they don't want blue hair because why? It's "unprofessional"? It "looks weird" or different from the norm? I guess that means they probably only hire people of different skin colors because they can't use that against you?

AlbinoAlex11 karma

It is definitely weird that companies do that. I mean it could potentially be justified if you work with the public but... look at Apple! Weird hair colours, tattoos, piercings. They don't care, just be you!

plantagra149 karma

What are the health consequences of albinism? Thanks in advance!

AlbinoAlex237 karma

Lack of natural protection from the sun due to lack of pigmentation, and quite profound visual impairment. That's about it for OCA.

ChickenWithATopHat135 karma

Pale skin and visual impairment? Are you a falmer?!

AlbinoAlex43 karma

Who?

darrendewey146 karma

How tough was school? Kids are cruel and mean as fuck. Were there any you just knew you couldn't be anywhere near?

AlbinoAlex273 karma

It actually wasn't too bad. I grew up in a small town and with all my classmates. When middle school and high school came around and popularity really started to matter, everyone was just used to be at that point. I was nowhere near popular, but also seldom bullied.

Vacant_Motto219 karma

I have read all your replies and I gotta say, you seem like a pretty allwhite guy.

I'll show myself out

AlbinoAlex223 karma

And don't come back!

MyParentsAre_Cousins37 karma

Are you at all tongue and in cheek about your condition?

AlbinoAlex131 karma

After I graduated high school, someone I met during my junior year admitted that they assumed I had albinism but didn't want to ask any questions about it for fear of offending me. I'm very open about it, open to questions and happy to make jokes—but of course everyone automatically assumes they need to play it safe and rightfully they should. Not everyone is comfortable with being different, so why take the risk?

That's why I love these AmAs, you guys are free to come in and ask anything you like.

cynoclast43 karma

On that note: does the carpet match the drapes?

AlbinoAlex93 karma

I don't have either in this room :)

Sufficio35 karma

Okay...I gotta know; what color is your dick? Is the head totally white? Or light pink? Sorry man, I just gotta know!

AlbinoAlex60 karma

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

swearinerin109 karma

Anything you would have wanted from a teacher when you were younger? (I'm a teacher and I have a 5th grader with albinism trying to see if you have any ideas that could help :)

AlbinoAlex163 karma

I wish they would have checked in more to see if I needed anything. We've noticed that lots of children with albinism are terrible at being advocates for their own needs. If my teacher forgot to give me a copy of the PowerPoint slides or didn't obtain a large print handout, I'd just live with it. Why? I don't want to bother them. I know that sounds incredibly silly, but it's very common. It's not really their fault, teachers have a ton going on and can easily forget about that one student out of 120 that needs that one special thing. But if the teacher forgets and the student doesn't speak up...

Though ultimately, I was mainly limited by just a lack of visual aids. I have several monoculars now and they're a godsend. I can see the board in class, I can see the crosswalk indicator, I can read signs and see finer details. I didn't get one until college, but it would have made K-12 so much easier, for both myself and my teachers. This stuff is expensive, and you need to seek out someone specializing in working with people with visual impairments to find the right solutions. Some kids prefer large print, some prefer magnifiers, some prefer CCTVs. It would be nice if every child with albinism could easily be given access to the tools they needed to succeed, but they can be hard to obtain if you don't live in a big city, and it's not a problem a teacher can easily solve by themselves.

trashrat8884 karma

What's the most ridiculous question you've gotten related to you being albino?

AlbinoAlex326 karma

I once had an ex ask me if I could see myself in the mirror. This was back when Twilight was incredibly popular.

It's not a question per se, but I have had someone tell me I didn't have albinism because I didn't have red eyes. I also had a doctor who refused to believe I had albinism and wouldn't buy it unless I showed him proof.

trashrat8874 karma

Was the person that told you that you didn't have albinism like....serious?

AlbinoAlex85 karma

They weren't really adamant about it, but didn't really say it in a playful manner, either. I can't really hold it against them, it's a common misconception.

Rando_gabby55 karma

Ok but the doctor had no excuse.

AlbinoAlex117 karma

Oh absolutely, it was complete bullshit. I mean maybe if I was darker it would be okay, but how can you look at me and be adamant that I don't have albinism?

I now carry an envelope full of letters/medical records confirming my diagnosis. I take them to every doctor's appointment, waiting for another guy like him...

Rando_gabby24 karma

I once had to get a doctor's note for missing something due to chronic illness. My regular doc was unavailable so I went to a walk-in clinic

The guy acted like it was charity to write the note besides me not having 'proof'

Like dude, you don't have access to my files and I brought all of these old prescription notes and testing documents. What do you want? An emergency bracelet? My body in a coffin?

Ah well

AlbinoAlex23 karma

I should have told him to google albinism and get back to me :P

Vulgarvultures82 karma

Do you glow in the dark?

AlbinoAlex102 karma

I wish!

everythinginabagel67 karma

With your visual impairment are you able to drive? If not, how do you get around?

AlbinoAlex133 karma

Not legally in either state that I've lived in. Luckily. public transit is pretty decent here. Slow and infrequent, but available. I also use Uber to get places where public transit doesn't go or if it's shut down.

I can get pretty much anywhere, on time if I set out early enough. The only issue is being on someone else's schedule. I can't get off work and just drive home, I have to wait for the train and then again for the bus. Those transfers can take ages if it's not rush hour.

swearinerin31 karma

Awww man this sucks to hear... sorry I have a student who has albinism and it sad for me to here he won't be able to drive as we don't live somewhere that is very public transit friendly. Super interesting though!!

AlbinoAlex78 karma

He actually could. People with albinism do drive, they use these little like... telescopes. Think of a pair of binoculars, but with each scope separated. They look through those to be able to see street lights or signs, and then rely on their normal vision for following cars ahead or knowing when to stop at crosswalks. Thing is, every state has a minimum visual acuity you must meet before you can use those and drive. I can't meet that minimum in the states I've lived in, but there are 13 states with lower minimums where I could. It depends on the state.

Also, self-driving cars are like five years away anyway. I know that sounds like it's been said perpetually, but there are too many companies working on it for it to take another decade or more. The problem won't be technology, but law. Ethics, insurance, etc.

wvjeepguy8163 karma

Do you feel obligated to mate with the darkest person you can to even your gene pool out a little?

AlbinoAlex255 karma

I mean, if someone was willing to volunteer as tribute...

Davidss1000156 karma

What's your favorite and least favorite thing about albinism?

AlbinoAlex157 karma

Favourite: Being incredibly unique, and getting to have lots of awesome experiences because of it—like these AmAs.

Least favourite: Definitely the visual impairment. A lot of it can be overcome with the right tools, but at the end of the day I'll never be able to see exactly what other people see.

MiroSpa49 karma

Do you have sunscreen on every time you go out at summer? I quess you have similar relationship with sun as me. BTW I really like your hairs. I have vitiligo and one patch is on back side of my hair so I have brown hairs with circle of white hairs.

AlbinoAlex44 karma

Usually only if it's like an outdoor festival or the beach. For casual walks to the supermarket or class, I just walk really quickly. I can usually make it in about 15 minutes or so, so not worth the time it would take to apply sunscreen that protects you for two hours.

Sunburns take about an hour or so of direct, continuous sun exposure. But when they do happen, they definitely hurt!

_agent_perk43 karma

Were you that albino kid I knew who used to push the other kids off the swings in third grade? If so, why did you do that?

AlbinoAlex124 karma

Because those were my swings! Bitches think they can just roll up and swing anytime. Hell no!

basb919138 karma

Are you my 6th grade band teacher?

AlbinoAlex57 karma

Nah, I sucked at band.

ImFriendsWithThatGuy38 karma

Sorry if this is a sensitive question. But does the life expectancy for people with albinism differ from those without it?

AlbinoAlex81 karma

Depends on where you are. The primary cause of death for people with albinism in most African countries is skin cancer (for obvious reasons) but I don't recall if it actually lowers their life expectancy. That likely wouldn't be an issue in the United States. Aside from the cancer risk, there are no other... components of albinism that would reduce life expectancy.

RalphNaderWreckedIt22 karma

You mentioned albinos in Africa. Wouldn't being hunted for voodoo materials lower one's life expectancy?

AlbinoAlex35 karma

The death rate in Tanzania has actually decreased dramatically in part due to efforts by UTSS, but it's not like it's over. Instead, children are taken to these schools—think of them like boarding schools. They study and live there where they can be safe, at the expense of being taken from their home villages and families. They're safe, but not free.

DigitalGeek2138 karma

Does your condition prevent you from dying your hair?

AlbinoAlex63 karma

No, though there's still debate as to whether or not the colour would stick due to the lack of pigmentation.

EmoPeahen63 karma

Hairstylist here. Your lack of pigmentation wouldn't matter. It just depends on the porosity of your hair and any underlying pigments that are there :)

AlbinoAlex93 karma

This is the answer I've been waiting for!

Now, would you charge me less to dye my hair since you wouldn't have to bleach it?

Wubdeez37 karma

Hey! We're here to ask the questions, not you!

AlbinoAlex91 karma

Reverse AmA, bitches!

H-ly2 karma

Colors that are direct due based work by staining the hair so that kind of color would most likely work although possibly not as well as it's supposed to, so you might have to use a shade darker than desired.

AlbinoAlex4 karma

It would stick, just... wouldn't it fade faster because there's less pigment? Supposedly no because elderly people still manage to get their hair dyed without issue and the bleaching process makes the starting point similar to my hair anyway, but you still hear stories from those who had it fade within two weeks. I'm still open to doing it and hope to soon, but I'm always curious about whether or not hair dye would be different in our case.

N3x035 karma

Greetings!

My family has this weird pigmentation issue where our knees and legs and a very little patch of white hair in the head where we are lacking any pigment. My family has never ever given any importance to the matter but I am the most affected of us since my belly is affected as well. I and the doctors I recently visited suspect piebaldism.

The thing is my girlfriend and I are starting to think in all seriousness about being parents and I am worried of the implications of getting bigger albino patches and them reaching eyes and ears. You perfectly estated the problems in this thread.

Would you ever consider going through some kind of treatment or process to make sure your descendance would not (i would not like to use suffer but my english is limited) suffer from your condition? Im actually weighting this very very seriously.

Thank you!

AlbinoAlex42 karma

I've never heard of the condition before but it's downright fascinating! The contrast seems to be that I have melanocytes but they don't function properly, whereas patients with piebaldism are lacking melanocytes altogether! I wonder if they use similar mechanisms...

I wouldn't worry about it spreading to your eyes and ears. The melanocytes in your ears play no role in normal hearing. This has been verified by hearing tests in 100+ patients with albinism, all normal. We don't know why there are melanocytes in the inner ear, but they don't play a role in the actual audition process. Similarly, losing pigment in your eyes would, at worst, probably just make your photosensitive. For albinism, it's the lack of pigment that led to abnormal development, rather than normal development being screwed over by the removal of pigment. We still don't understand the true mechanisms behind pigment and vision, but I wouldn't worry too much.

It seems like what you're asking about is a form of gene therapy. I personally am not seeking a cure for my own albinism and would not take one if it existed. But to treat, say, an unborn child with it... I don't think I would do it, but it's up to each individual person. Like I said in another response, we finally have the means to edit DNA. Whether or not we should do it on humans remains a very controversial ethical battle, with good arguments on both sides.

labgeek9333 karma

Does it influence where you travel to or not? Either because of climate or culture.

AlbinoAlex60 karma

Not where I travel but definitely what I do when I travel. Not going to spend hours tanning on the beach or hiking, at least not without a ton of sunscreen.

CanoTheMonkey30 karma

Have you had the urge to become a super villain?

AlbinoAlex69 karma

I do, but I must keep it contained. Transforming would be disastrous for the world.

Black_Island30 karma

Are you the life of the party? Because honestly you look cool as fuck.

AlbinoAlex13 karma

Not at all, seldom attend parties—though I also don't go to a party school.

hugTHEmeatshit29 karma

Do you find that people look at you all the time and does this cause you to suffer with low self esteem or depression?

BTW l am morbidly obese and this causes me depression and low self esteem.

AlbinoAlex61 karma

The beauty of being visually impaired is that I can't actually see people staring. I literally can't make out their facial expressions from a distance, what they're looking at or what emotion they may be displaying. I know it happens, when I'm walking around with other people they point out that everyone stares, but I personally cannot and therefore do not notice it.

But even if I did... I'd take it as a curiosity thing. Imagine if you saw Britney and Abbey Hensel walking down the road. You'd stare. But not in a "OMG what freaks!" kind of way. More in the sense of... fascination. Little kids especially, they very obviously stare. But that's probably because they've never seen anyone with albinism before.

hugTHEmeatshit8 karma

Thanks for your quick reply mate:)

Is your poor eyesight caused by your albanism? Can you get laser surgery to get them fixed or cant you just get glasses?

AlbinoAlex13 karma

Yes, and no LASIK wouldn't work. The exact reasons are complicated but to put it simply, LASIK and glasses only affect the front of the eye while the problems are in the back of the eye. It's like trying to fix a broken camera by affixing a new lens.

1775mike28 karma

How much do you think Hitler would love or hate you?

AlbinoAlex41 karma

It's hard to say. Maybe pose the question over at r/askhistorians?

topcoatsandhats38 karma

This is a difficult question to attempt to answer. While hitler would have lauded in the fair skin and hair, needing glasses would definitely count against you. In addition, albinism might have been viewed as a genetic defect and therefore not wanted in the aryian gene pool. However albinism wasn't entirely categorized until the early 20th century, so by the time of Hitler's reign, it is hit or miss whether or not he would have known about it/if doctors would have had significant evidence/research on it

AlbinoAlex23 karma

Also, if I could try to pass off the crappy vision and play it cool...

nerdtony20 karma

I am coaching a baseball team of 7yr olds. One of them has albinism and is legally blind. His mother told me this will likely be his last year playing. They can still use the batting tee to hit if they can't hit the coaches pitching. But after this year it is all coach and kid pitch.

My question is, what can I do to ensure this kid has a great experience in his last season? He'll obviously need some special attention, but I don't want to single him out in any way that may embarrass him. I am thinking a conversation with his parents about his limitation may be in order, but I am not quite sure how to approach.

AlbinoAlex16 karma

If he's really into it, make sure the rest of the team encourages him. I mean yeah there's some embarrassment having to use a tee, but if you feel like part of the team and like the sport in general, it should go well.

I had to do P.E. for several years in middle school and high school and hated it. We had an adaptive P.E. teacher who'd come by with special equipment (like big, yellow balls and other very visible things) to try to make it easier. I still hated sports, but it was nice to be able to play modified versions with my classmates.

I know that doesn't really answer your question, what I'm trying to get at is if he likes the sport then it shouldn't be a huge problem, as long as the team can support him.

ringelgold20 karma

  1. Do you think your situation is maybe helping you or harming you in social and professional activities? I mean do you think that maybe people like you or dislike you just on the fact you have albinism.
  2. Also when you were in school did you have problems with other children?
  3. And lastly - if there was a way not to have this condition (albinism) anymore (like some kind of cure) would you be for it or agains it?

AlbinoAlex29 karma

  1. That's a really interesting question. I think it would only harm in social activities if people did not understand that the visual impairment makes it very difficult to pick up on social cues. Someone could wave to me from down the hall and I probably wouldn't see them. Those unaware of the visual impairment might think "He's ignoring me, what an ass!" For professional settings, it's usually something I prefer to disclose immediately to avoid problems. I mean people can be pretty bigoted, but I highly doubt there have been many people who just straight up disliked me for having albinism, especially adults. There are some people here pissed that I keep doing AmAs, but that's straying from the original question.

  2. Not really. I grew up in a small town along with my classmates from pre-K to high school. The kids I played in the sandbox with were the same kids I sat next to at my graduation. So by the time middle school and high school hit and popularity started to matter, everyone was used to be. I wasn't popular by any means, but seldom bullied.

  3. So at present there is no cure for albinism, but they've tested a few drugs trying to improve vision in patients with albinism. I debated for a very long time whether or not to participate in those trials. I don't want a cure, and if one existed I wouldn't take it. But I think we should look for one, because there are plenty of people with albinism who are unhappy with the condition. It usually stems from bullying, but I know several who refuse to even talk about it, hate it when others figure out they have albinism, and try their hardest to conceal it. For these individuals, a treatment would be life changing in more ways than one. I participated in the drug trial to help us get closer to one day having a cure. Not for me, but for them.

codyfukincat19 karma

Have you ever punched someone in the face?

AlbinoAlex146 karma

Never, I'd probably miss anyway.

NoSoyTuPotato15 karma

Don't take this the wrong way, but what is the best joke you've ever heard of your condition if any (of course that is appropriate and light hearted)? If not, what is somebody's reaction to it that made you laugh? I assume a child maybe.

I saw that you're Latino. I'm a Latino redhead and get some confusion sometimes as well

AlbinoAlex44 karma

I haven't heard too many albinism jokes. The top of my head one, that's pretty weak, "An albino walked into a bar, he didn't see it coming." Most jokes just revolve around pale skin or my inability to tan, all good fun. The cutest was this little kid who was barely learning to walk and still had to hold on to the couch cushions from time to time. I kneeled down to pick him up and he just grabbed at my hair. Clearly he was fascinated by it.

It's fun though, you get to blend in. It's even better going to Mexico and freaking out the locals. They just think I'm another white tourist, and then I bust out the Spanish and they just can't believe it. Though I have yet to try to haggle with them in English/broken Spanish before reverting to perfect Spanish to see if it would score me a better deal.

olmikeyy14 karma

What's the average velocity of an unladen swallow?

AlbinoAlex27 karma

420mph.

sedition-13 karma

are you eyes purple?

AlbinoAlex65 karma

They're actually a mix of colours

poutine_life6 karma

is the skin in your crotch area still darker than the rest like normal people?

AlbinoAlex12 karma

Maaaaaaaaybe ;)

sillyrants4 karma

Do you use night mode to read reddit?

AlbinoAlex10 karma

I just invert the colours on my iPad and read for hours. White text on a black background is a godsend.

(I know that's what night more basically is, but I do it under the accessibility settings. Apple is lagging on putting a dark mode on their products).

MyrLeaf3 karma

What do you know about African Albinos ?

AlbinoAlex3 karma

I've met a few, they were pretty nice. The most common cause of death for people with albinism in Africa is skin cancer. If you have albinism and were born in Africa you're most likely to have OCA 2.... that's all I can think of off the top of my head.

DaquanHaloz3 karma

Are you mexican?

AlbinoAlex5 karma

Yes.

Fitchywanklebottom3 karma

Do you have any friends in Montenegro?

AlbinoAlex5 karma

Not presently, would love to go there someday, though.

Ha7den3 karma

Do you have amy super powers that you are aware of?

AlbinoAlex5 karma

I can teleport (but only on Tuesdays).

bob_in_the_west3 karma

How is your dancing?

AlbinoAlex5 karma

Terrible for now, but I will learn!

nms121319943 karma

What's the meanest thing someone has ever said to you?

AlbinoAlex8 karma

I would say anytime anyone includes "freak" or "mutant" or some derivative in their insult. I mean yeah call me white, I make those jokes all the time, but it's trying to outcast me or point out that I'm wildly different that's meaner.

hottestlabbieatshsu3 karma

Do you ever research witchdoctors??

AlbinoAlex3 karma

Not actively, but I'll be doing more research so I can hopefully give a TED talk on the matter one day.

keepcoolidge3 karma

How do you feel about biotechnologies that could allow parents to 'edit' genetic diseases or traits like albinism in their children? Would you consider something like that? Do you think people should be allowed to?

AlbinoAlex10 karma

Most researchers agree that gene therapy will be the only viable treatment for albinism going forward. They've done a few drug trials to treat the vision problems in albinism which haven't been successful. It's kind of agreed that once the eye abnormalities occur in the womb, there's no turning back—even if you can stimulate extra pigment production down the road.

Ultimately, this ties down to the ethical question of whether or not we should allow gene modification for any human for any reason. Yes you can rid the world of fatal diseases (Albinism is quite stable, Hermansky-Pudlak syndrome is something I'd prefer to treat with this), but then aren't you crafting what you would consider the perfect human? What do you knock out and what do you keep? It's a fascinating discussion.

keepcoolidge3 karma

Thanks for answering, definitely a fascinating discussion, one that I haven't been able to form an opinion on and not for lack of trying.

By way of a follow up: Is a hotdog a sandwich?

AlbinoAlex3 karma

Yes it is, it's a smaller submarine sandwich.

web_wanderer012 karma

How much different is your life compared to a non-albino person?

AlbinoAlex5 karma

It would depend on that person. Just like everyone is different, everyone with albinism has different experiences. But to put down some of the major things... I can't drive and will never be able to. I can't tan, I can't see the board in class. I can't see 3D effects and have terrible depth perception. Lots of trouble playing most kinds of sports, etc.

DOBBYisFREEEEE6 karma

You'd be the perfect storm trooper

AlbinoAlex5 karma

Remember the storm troopers in Breaking Bad?

DOBBYisFREEEEE2 karma

I don't remember seeing storm troopers in breaking bad....

AlbinoAlex7 karma

Remember the like second to last episode where the white supremacists show up and have a shootout with the cops before eventually killing Hank? It was a running joke that they were like stormtroopers because of their inability to actually kill anyone.

spadoynkal2 karma

Why so pale, ginger man?

AlbinoAlex11 karma

Baby, I was born this way!

CynicalMaelstrom2 karma

Would the feminine pronoun of an Albino be an Albina? Or is that just me being dumb?

AlbinoAlex9 karma

Maybe in another language? I'm trying to think if any disorder identification has male/female pronouns, I can't think of any.

Most people prefer "person with albinism" anyway.

erdelyik422 karma

How long can you stay in sunlight on an average summer day, for example if you were on holiday in Spain/Italy/Greece etc just walking around town hanging out?

AlbinoAlex3 karma

About an hour? Maybe slightly more? Definitely under two hours before I sunburn, but indefinitely if I keep applying sunscreen.

wyetye2 karma

Are you Wenger in or Wenger out?

AlbinoAlex2 karma

Everyone seems to want the poor bloke out. Should I join the hivemind?

wyetye2 karma

No keep him in because it's funny

AlbinoAlex2 karma

What's the whole deal with that anyway? I don't follow sports, especially not UK sports.

CtrlShiftAppoint2 karma

Afraid to go to Africa?

AlbinoAlex2 karma

Not at all.

CtrlShiftAppoint3 karma

But they'll chop you into pieces for black magic.

AlbinoAlex7 karma

If they can catch me!

CtrlShiftAppoint4 karma

Don't you know that Kenyans win all the marathons?

ಠ_ಠ

AlbinoAlex5 karma

By drinking Powerthirst?

R0rschach12 karma

In the White Stripes song "The Hardest Button To Button" which button is the hardest to button? Is it the top, the bottom, or one of the middle ones?

AlbinoAlex5 karma

It depends on where your start from and how many buttons there are. If it's a polo shirt, the top one can be tricky whether it's first or last because of the angle. If it's like a lab coat, the bottom one is the worst because it's hard to reach when going top-down and easy to misalign when going bottom-up.

ivebenrunning2 karma

What's the biggest misconception someone has made about you?

AlbinoAlex7 karma

In general, some people assume people with albinism have red eyes—likely because of the movies. It's a misconception, most people with albinism have blue eyes.

Chazzos2 karma

Due to your poor eye vision, are you able to play video games. If so what are you favorite games?

AlbinoAlex3 karma

I am but I have to get rather close to the screen. Split screen multiplayers were always a pain because I'd block everyone's view :P I don't have a console or TV here so I mainly just spend an obscene amount of time playing Minecraft along with GTA on my iPad mini. I'm definitely going to get Max Payne and look into other awesome iOS games now that I have a mini with better graphics and better performance. You know your system is shit when even Minecraft lags.

Fight_Me_Mr_Tusk2 karma

Do your eyes vibrate or is that not a common thing?

AlbinoAlex3 karma

I've never heard of them described as vibrating, though my favourite is "dancing eyes."

It's called nystagmus and yes it's common for people with albinism. Tends to slow down as you get older but is very much there.

killa_cali771 karma

Why dont you smile?

AlbinoAlex5 karma

I'm sick, and seldom take selfies. Also kinda tired.

Younggilly961 karma

Do yoy ever worry about being kidnapped and butchered for parts by Africans?

AlbinoAlex2 karma

Not living in America, though I'll keep an eye out when I visit Tanzania.

WhyNotHumpAlot1 karma

Just wondering did you go to Clements high?

AlbinoAlex2 karma

I did not. Did you see my evil twin there?

LoadedTunafish1 karma

Why do you do an AMA once a year? Is it the attention?

AlbinoAlex1 karma

It's actually way more than once a year.

Hokutonowolfken1 karma

What's your favorite kind of ice cream?

AlbinoAlex1 karma

Chocolate, followed by chocolate/vanilla mixed. But I'm pretty boring.

OGFahker1 karma

Are you angry often? I always picture albinos being more pissed than gingers lol.

AlbinoAlex1 karma

Not really. I'd imagine temper is more linked to coping mechanisms than genetic disorders (except psychiatric disorders).