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: 2085 • Responses: 135  • Date: 

CBate2089 karma

Is your penis slightly darker than the rest of your body?

AlbinoAlex3004 karma

Checks

Yes.

Guitar46775 karma

Proof or it's not true.

... did I just ask to see his penis?

AlbinoAlex4683 karma

Jellyfish_Princess78 karma

Mine too, does my dick have albinism?

AlbinoAlex220 karma

I don't know, let's compare and find out.

Pinmissile1267 karma

Is there a secret league of albinos, do you hide deep beneath the earth to shield yourself from the sun, and do you plot to steal my melanin?

AlbinoAlex1327 karma

Yes, yes, and yes.

Mullerkill491 karma

Dear god

AlbinoAlex836 karma

Fear me!

whitewalker_x406 karma

I, for one, welcome our albino overlords

AlbinoAlex496 karma

You will be rewarded for your loyalty with a fruit basket :)

pastanaut63 karma

And chocolate ??

AlbinoAlex178 karma

Yeah, but it's Hershey's. Cadbury/Kinder is reserved for the actual albinos.

maddzy833 karma

My father had albinism. Unfortunately he's passed away now. I'm not albino myself but I do carry the gene, so there is a possibility I could have children with albinism. Given your own childhood experience, what advice would you give a parent of a child with albinism to help their child to cope both with the physical conditions as well as socially (making friends, dealing with bullying, etc).

How was your own childhood?

AlbinoAlex788 karma

Sorry to hear that, I'm sure he was a great guy.

There are books and meetings and support groups for parents of children with albinism. Not being a parent myself I'm not the best to ask, but definitely listen. Listen to their needs, stories. Make sure they have what they need and that they wear sunscreen! Take them to local meet ups and the national conferences. Basically, anything to boost confidence.

helix1941 karma

How quickly do you burn without sunscreen? Do you have to wear it every day?

AlbinoAlex69 karma

I don't have concrete numbers because obviously I try to avoid getting sunburned. I'd say about 45 minutes of continuous sun exposure. Keep in mind, I define a sunburn as red, hot skin that's painful to the touch and peels after a few days.

Airazz16 karma

Yup, that's the definition of sunburn. The time depends a lot on where in the world you are.

AlbinoAlex18 karma

Also, it's not like you go from sun exposure to your skin hurting within a minute. Usually you sit out on the beach, go to dinner, and the next morning the back of your neck feels like it's on fire. There's no telling exactly how long you were at the beach before the damage was bad enough to burn you, so I don't have and couldn't provide concrete numbers, only the amount of time I have been in sunlight without a sunburn.

nighthummingbird806 karma

do you have a special cell phone or use apps designed for low vision or specific settings on computers?

AlbinoAlex778 karma

Brighter and Bigger is a godsend! I also use the native zoom functions in both iOS and macOS. All the best mapping and transit apps, etc. A lot of it is just taking a picture of what I want to see and zooming in :P

NicoDeGuyo233 karma

With said, how bad is your eyesight? is you prescription eye glasses really strong? or do they not do much? is it to the point where you have had to learn braille(yes i had to google how to spell that)?

AlbinoAlex258 karma

The other reply to your question absolutely nailed it. If you want a more thorough answer, this video does a fantastic job explaining what people with albinism see, it's targeted at those who don't have albinism.

I don't know my glasses prescription by heart or what constitutes a "strong" rx, but my vision isn't bad enough to require me to learn braille, though it's a good skill to have.

HydrochloricTorpedo677 karma

Do people treat you differently when you go out ? Are you in a relationship ?

AlbinoAlex1123 karma

I personally don't notice it because I can't see well enough to, but I'm told a lot of people stare. With that said, no one actively treats me differently.

No.

palex00183 karma

Were you ever in one?

AlbinoAlex240 karma

Of course.

Serialk168 karma

/r/incels would like a word.

AlbinoAlex623 karma

They're free to come over and ask/say what they want, I'm not going in there!

pincheloco147 karma

It seems you are well aware of what goes down in that sub

AlbinoAlex89 karma

I wonder how many people in that sub go on to get a girlfriend.

It's like the people who are like "Yeah when I was 19 and single I thought I'd be single forever and cried and then I got a girlfriend at 27 and life's good. Don't fret it ya'll."

NextToToiletPaper561 karma

Is your butthole naturally bleached?

AlbinoAlex856 karma

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

zzephyrus438 karma

If only there was a way to see your butthole...

AlbinoAlex1270 karma

Do you volunteer as tribute?

zzephyrus317 karma

Send me a PM mate...

( ͡° ͜ʖ ͡°)

AlbinoAlex370 karma

Giggity!

Nick1250689 karma

OP will surely deliver, let's just wait.

Also, are your bones albino?

AlbinoAlex289 karma

Here you go.

Do bones even have pigment?

jarchiWHATNOW553 karma

Do you feel more privledged being extra white?

AlbinoAlex513 karma

Sure.

ballsnweiners420512 karma

Do you ever mess with people? Like dress up in a black robe and stand in a friend's window at night.

AlbinoAlex618 karma

I should totally do that. Best I can do is sneak up on people.

ballsnweiners42047 karma

Hell yeah. Glad ya didn't take it in an offensive context. I just know if I was albino or had a friend that was we would do some pranks. Prolly been asked already, but what are some advantages of albinism?

AlbinoAlex65 karma

There are none that come with albinism by itself, it is a genetic disorder after all. But I've had a lot of amazing experiences that I would have never had if I didn't have albinism.

asks_about_poops499 karma

What color is your poop?

AlbinoAlex436 karma

Brown.

SamFlynn1288477 karma

Do you mostly go out at night because of the sun? And how bad is it driving in the hot bright sun?

AlbinoAlex670 karma

I can handle sun exposure, just not for very long. During the day I'll just walk quickly and try to stay in the shade.

Thankfully, glass can stop a lot of UV rays, but I try to sit in the middle of the car or on the side opposite the sun anyway.

Jebbediahh210 karma

Have you tried those sunscreen shirts? They make clothing with sun protection built in

AlbinoAlex510 karma

I've heard a lot of good things about UPF clothing, but never actually looked into it. My current outfits work well and I just use sunscreen (or stay inside).

Who wants to go outside when it's 106℉, anyway?

DeanCota189 karma

Phoenix Arizona native here, I hear you on wanting to stay inside during stupid heat.

AlbinoAlex307 karma

It's going to be 103℉, my parents don't like using the A/C and it frequently heats up to 92℉ indoors. I'm fucking bathing in my own sweat and they're perfectly fine :(

DontTreadOnBigfoot239 karma

Your parents might be robots.

AlbinoAlex115 karma

Nah, they just grew up in southwest Mexico where it gets hot and humid as fuck in the summers. ZERO places had A/C, even to this day, so of course they can live without it.

Cat_agitator40 karma

Yeah get those shirts, they were a game changer for me. They are also really cool and take the sweat off !

AlbinoAlex46 karma

Really? I would have thought long sleeves in the summer would be a death sentence :P

Cat_agitator15 karma

Me too......until I tried! I've always burned easily and I'm on a medication that makes me burn faster yet. These shirts have been a godsend this summer- even at 100f (37.5c)

AlbinoAlex15 karma

Good to hear, I'll definitely look into them.

Disciple_Of_Tachanka346 karma

Is any one else in your family Albino? Or is it just something completely random?

AlbinoAlex584 karma

I have a cousin in Mexico who has albinism. She's on my mother's side, can't remember where on the tree. It's not necessarily completely random because it's a genetic disorder, but the odds of finding another carrier are so slim.

BundleOfJoysticks1549 karma

Hopefully low on the tree so she can stay in the shade.

AlbinoAlex700 karma

Not sure why you got downvoted, that was pretty funny.

Disciple_Of_Tachanka60 karma

So would any children you have be Albino?

AlbinoAlex166 karma

Depends on whether or not my partner is a carrier for the specific type of OCA I have.

AyLilDoo330 karma

Your name is latino / Spanish. Do the gente have nicknames for you? Besides the obvious blanquito?

AlbinoAlex331 karma

Guero (I can't spell in Spanish to save my fucking life) is my grandmother's de facto name for me.

ChocolateSphynx312 karma

Thanks for doing this! I didn't realize I had so many questions, so sorry for the list:

  • What's the worst animosity you've encountered as a n albino person with albinism?

  • Is it cool for pigmented folks to use the term "albino" or is there a preferred nomenclature?

  • Have you ever travelled to one of the countries where albino people with albinism are persecuted and even hunted for alt-medicine/witchdoctor placebo cure-alls, like Tanzania, or other places I recall reading about in the news?

  • Do you ever freckle at all?

  • Have you ever found a crumb or speck of dust on your skin and thought it was a freckle for a minute, throwing your life into a tailspin of identity crisis?

  • Is there any connection between albinism and gingerism?

  • Do you/are you hoping to have children with albinism, or are you concerned about passing on the trait at all?

  • What's the stupidest question a pigmented person has asked you about albinism (or in general)?

  • What are some things you wish more people knew about albinism?

AlbinoAlex713 karma

What's the worst animosity you've encountered as an albino?

General insults and teasing tend to hit a little harder than they should. It's very rare for people to point out my albinism, much less ostracize me for it.

Is it cool for pigmented folks to use the term "albino" or is there a preferred nomenclature?

It depends on who you're talking to. In many circles, "albino" has a derogatory connotation similar to "midget." Some people will tear your head off for using it while others will use it right alongside you. In Albinism InSight we use "person with albinism" and so I'm just used to that by now (and I avoid pissing people off). But personally, I'm totally cool with "albino."

Have you ever travelled to one of the countries where albino people are persecuted and even hunted for alt-medicine/witchdoctor placebo cure-alls, like Tanzania, or other places I recall reading about in the news?

Not yet, but I'd like to sometime next year. I have met people from those countries, though.

Do you ever freckle at all?

I don't think so? Those red spots are either freckles, razor burn, or acne!

Have you ever found a crumb or speck of dust on your skin and thought it was a freckle for a minute, throwing your life into a tailspin of identity crisis?

Some chocolate melted on my palm last night and I thought I'd developed a dark spot and my AmA career was over. Then I washed my hands. Phew!

Is there any connection between albinism and gingerism?

That's a good question. They both involve low levels of pigmentation, but I don't think there are genetic links.

Do you/are you hoping to have children with albinism, or are you concerned about passing on the trait at all?

That's always been a "we'll cross that bridge when we come to it" decision. There are pros and cons to having children with albinism. Personally I wouldn't be concerned nor mind having children with albinism, but there are other factors in play.

What's the stupidest question a pigmented person has asked you about albinism (or in general)?

During the Twilight craze, my ex-girlfriend asked if I could see myself in the mirror. I've always had people swear up and down that I don't have albinism because I don't have red eyes.

What are some things you wish more people knew about albinism?

The quite profound visual impairment that is associated with it.

piyoucaneat951 karma

The quite profound visual impairment that is associated with it.

So... you can't see yourself in the mirror then?

AlbinoAlex596 karma

Clever :)

Real_megamike_6481 karma

!silver

AlbinoAlex136 karma

Is shiny a colour?

SupremePancakeKing135 karma

Is mayonnaise an instrument?

AlbinoAlex140 karma

Is psychology a science?

Asdfire102 karma

Is England a City?

AlbinoAlex105 karma

Isn't it a country? In a commonwealth? That used to be part of the EU?

Nigan414 karma

U are the BRO

AlbinoAlex19 karma

So are you!

ChocolateSphynx78 karma

woo! Thank you! I never knew there was associated vision impairment until today, but it makes me wonder about the involvement of pigment in eye development, and it's sending me down a wikipedia rabbit hole at the moment. I've also never met a person with albinism before, so I really appreciate all the answers.

AlbinoAlex70 karma

Lucky for you, even the best researchers out there still do not understand the relationship between pigment and vision.

If you get a chance, look into the levodopa and nitisinone clinical drug trials.

DumbDonky007288 karma

What do your nipples look like?

AlbinoAlex409 karma

Checks

Light pink?

cacabean276 karma

What do my nipples look like?

AlbinoAlex696 karma

Delicious!

bb_tata60 karma

Yum

AlbinoAlex162 karma

( ͡° ͜ʖ ͡°)

MinisculeBallerBrand192 karma

What kinds of music do you like? Favourite artists? I just want to talk to someone, man.

AlbinoAlex188 karma

Pop mainly, wide variety of artists. Colbie Caillat and Ingrid Michaelson are some of my favourites.

What about you?

MinisculeBallerBrand68 karma

I'll have to check them out! I've been a hiphop guy pretty much my whole life but I'm trying to get into some new genres and don't know where to start

AlbinoAlex57 karma

What do you normally listen to?

Tsu-Doh-Nihm138 karma

Do people with albinism take Lutein as a remedy for vision impairment?

Lutein is a pigment found in the eye. It is also found in plants, and is available as a supplement, usually for macular degeneration.

AlbinoAlex214 karma

There was actually a study at Johns Hopkins that had people with albinism taking lutein and zeaxanthin daily to see if it would improve vision. I have no idea what the status of the study is because the researchers never return my emails/calls, but we all thought it was interesting. Considering that these are OTC dietary supplements, I could just take them myself, but I'd really like to see the study happen and the results.

CharistineE76 karma

I believe they have to publish the results on clinicaltrials.gov.

AlbinoAlex94 karma

That's if the researchers actually bother to go back and do so :P

CharistineE58 karma

I'm pretty sure they are required by law. But studies last years and then they have the statistical analysis and review for publication, etc.

AlbinoAlex64 karma

That's interesting. This study was completed like three years ago, I have the research paper, but it says no results posted.

Thankfully, if worse comes to worse I have access to ScienceDirect and all those research search engines so I can find it there.

Tsu-Doh-Nihm2 karma

If it were me, I would not wait for any studies. Lutein/zeaxanthin supplements are dirt cheap.

Lutein and zeaxanthin are also naturally found in green leafy vegetables such as spinach and kale. But pills are much easier, of course.

AlbinoAlex5 karma

Fair point, but it would be nice to see a placebo-controlled study showing the stuff works before jumping in.

zeissbickham124 karma

What other illnesses/diseases (if any) are you predisposed to as a result of your condition?

Other than sunburn.

AlbinoAlex183 karma

Skin cancer after sufficient sunburns, but albinism doesn't like compromise immune systems or anything like that.

Prognosis is good, and the disorder is stable through to late adulthood, assuming proper sun protection.

Cr4wler2k121 karma

What is love?

AlbinoAlex232 karma

Baby don't hurt me!

Teh_Red_Link51 karma

Don't hurt me

AlbinoAlex42 karma

No more!

moodykay113 karma

Will eating you provide me with magical powers?

AlbinoAlex191 karma

Yea, but only on Thursdays.

MadDoctor581336 karma

Wait, do I have to eat you on Thursday and I have powers forever, or can I eat you anytime and get powers only on Thursday?

AlbinoAlex78 karma

This guy reads the fine print.

PizzaWithKetchup106 karma

Does Albinism make it harder for you to meet girls? If so, what were your obstacles?

AlbinoAlex295 karma

This is a tough question to answer. In the dating world, looks matter. No one wants to admit that, but it's true. By being unattractive, you're automatically at a disadvantage. Fewer glances, fewer swipes, fewer numbers. It's just a fact.

However, when someone is willing to overlook your looks, personality has to shine. Looks may be the first impression but personality seals the deal. I haven't really had too many chances for personality to shine, but I also don't really put myself out there.

effingwhatever66 karma

What about the flip side...how would you feel if someone was actually strongly attracted to you in part because of your albinism? Like, didn't just see past it, but thought it was a beautiful and attractive thing?

I ask because I had an off-again/on-again relationship with a person with albinism in college who really struggled with how they felt about their albinism. But, I was actually really attracted and thought it was beautiful. It wasn't that I "saw past" the albinism...I looked right at it and felt desire. I don't think it's fetishizing because we had some real personal and intimate connections in general, but the looks definitely did something for me.

I kept mostly quiet about it because I knew this person wasn't fully comfortable with it, but I've always wondered if it was because of that person's internal struggles with self image or if it really was weird and awkward for me to actually find the albinism particularly attractive.

So, if a woman basically found your albinism to be attractive and beautiful, and you knew that your unusual looks were a big part of what attracted her to you in the first place, would you be weirded out by that or would you be cool with it (assuming you were mutually attracted)?

AlbinoAlex91 karma

In the end personality is what matters so I mean as long as we had chemistry, doesn't hurt that they also found me insanely attractive for some reason.

I knew this girl with albinism who tried so hard to cover up. She got spray tans and dyed her hair and wore plenty of make up. She eventually confided in me that she was bullied a lot for having albinism and now tries to conceal it and HATES when anyone guesses she has albinism. It's like this ugly scar that won't go away.

Now personally, I thought she was insanely attractive when she was just herself. The spray tan made her look like a carrot and the odd silver her hair eventually turned into was just weird. But many people have problems coming to terms with the condition, and that's part of why I'm glad there's research for a cure, but that's a different discussion.

Kadaz-4 karma

This is a tough question to answer. In the dating world, looks matter. No one wants to admit that, but it's true.

I don't know why you keep saying that but it's just plain simply wrong. Looks matter (as they should) and everyone knows/admits it.

No shit you have to have an interesting personality, but you also have to be aesthetically pleasing/sexy for your partner no matter how "interesting" you think your brain is.

It really is a combination of everything, you have to work on your body/looks as much as you have to work on your mind. Don't fall in the /r/iamverysmart , /r/niceguys circlejerk cause then only you will find yourself attractive.

AlbinoAlex3 karma

I think a big part of overcoming this in general and loving yourself and finding yourself physically attractive and acceptable.

Tsu-Doh-Nihm97 karma

Have you seen the documentary "In the Shadow of the Sun" (2012) about people with albinism in Tanzania?

Highly recommended!

AlbinoAlex88 karma

I don't think so, though I'm familiar with the situation in Tanzania.

Definitely looking it up once this is over :)

fieldsc89 karma

Did you ever dye your hair?

AlbinoAlex106 karma

Not actively, but I've always wanted to.

Watermelon-Slushie60 karma

I'm gonna piggyback on this one too!

Does hair dye act any different with albinism? Like does the dye stick better/worse? I imagine it doesn't, but was always curious.

And just something I've always wanted to ask: whats the general term accepted for someone with albinism? I've heard people say "albino" can be offensive and prefer 'albinistic', but how do you feel?

AlbinoAlex63 karma

That's a good question that I've always wanted the answer to. The general consensus seems to be that the only difference is that people with albinism do not have to bleach their hair before getting it dyed. Hair dye may made a little faster but overall permanent hair dye will be permanent. Keep in mind this is based off Reddit and a couple friends—I've yet to survey lots of people with albinism but I hope to in the future.

It depends on who you're talking to. Organizations tend to use "person with albinism" or "people with albinism," and that's what we use in Albinism InSight. "Albino" tends to have a derogatory connotation similar to "midget" so a lot of people don't like it. I don't mind it, but I know people who will definitely give you shit for calling them albino.

WMTwo41 karma

You might want to try dying your eyebrows just for fun. It would make a huge difference in your appearance.

Not saying they look bad (I like them) but people underestimate how big of a difference eyebrows make to how we look.

AlbinoAlex35 karma

When people dye their hair, do they dye their eyebrows as well? From what I've seen, a lot of people don't.

KatMonster35 karma

Some do, but hair dye can be really dangerous to get in your eyes, so I'd talk to a stylist for tips/recommendations if you want to give it a shot. There are some that are safer. Before that, you could totally try mascara (which comes in a wide variety of colors sometimes) on them. Or powder/pencils. Just to see what it would look like. :)

AlbinoAlex50 karma

Can I just shave my eyebrows and pencil them in?

SashaWoodson26 karma

To piggy back, ever spray tan?

AlbinoAlex46 karma

Never, though I totally should.

krusnikon78 karma

Do you have eyesight issues? My nephew has ocular albinism. He is only 2 but has been wearing glasses for a year and has the darting eyeball thingy.

AlbinoAlex69 karma

Yes I do, very similar to that.

ancolie71 karma

Hey Alex! I help run a roleplaying group (Game of Thrones themed) where people play families across generations, and one of the requirements for creating new characters is rolling traits for them. One of the traits you can get is 'genetic disorder'. Inevitably if someone hits this, they often pick one of two disorders- either albinism or heterochromia. The reason for this, it seems, is that these are thought of as 'cool' and people believe they wouldn't really impact the character's life or ability to function day to day. When they write these characters later, there's no mention of struggles they go through because of their disorder- it's just treated like a minor detail that only affects their appearance, with no downsides or deeper impact.

My question, I guess, is what advice you could give to people trying to write from the perspective of a character with albinism and any recommendation you have for how they could more realistically and sensitively portray them. If you lived in the medieval era, before vision could be corrected and before the cause of albinism was understood, what challenges do you think you'd face as a result of albinism?

AlbinoAlex60 karma

That sounds really really cool! I've never been into Game of Thrones but I love that people get that much into it.

We get approached by authors on occasion asking us to read their novels to make sure they have an accurate portrayal of a character with albinism. It's tricky because you could read every scrap of information out there, but you can never really understand what it's like. I can read stories and research articles and self-help books on depression until my eyes bleed, but I still won't truly understand what it's like to have it.

I would advise reading basic medical literature on albinism and reading through personal stories (and one of my 18 AmAs). There are a few documentaries of people with albinism, the True Life one did a good job IMO.

For medieval era, glasses actually wouldn't be much a problem. Many people with albinism can get by without glasses. But anything that requires coordination or depth perception like sports or fighting would be a problem. Also being outside for long periods of time would surely result in a sunburn.

ImGoingToHell68 karma

Ever thought you were colorblind instead of an albino?

AlbinoAlex168 karma

Never.

But let's go deeper. How do you really know that your pink is my pink? How are we sure that we all perceive colours the same way?

bug-a-pottamus75 karma

I think about that often and try to imagine if my blue was someone else's green or whatever. Deeeeeeeep.

AlbinoAlex44 karma

You know how at the eye doctor they make you like arrange these squares by shades of colour? Say going from blue to green? How can they do that if we aren't sure we all perceive colours the same?!

bug-a-pottamus36 karma

Actually i read an article a while ago that said something along the lines of - the color scale and order itself would be the same for everyone, like roygbiv would still be in that order, because the colors are only our perception of the different wavelengths, red being longer and decreasing through violet.. but out perception of the wavelengths could just look different in our brains...? I dont know enough about this shit not to sound like an idiot talking about it lol

But ive never had to do that at the eye dr. Im nearsighted, have an astigmatism, and bad night vision, but never had my color perception tested

AlbinoAlex23 karma

That makes sense, and yeah the basic colours are pretty easy.

When I did a clinical trial, I had to arrange 100 colours in 20 piece segments just like this. Blue to green, pink to purple, etc. There actually was a "right" way to do it, in that they actually had a numbered order. They told me that even the office staff couldn't get it 100% right, and they had perfect vision!

olivertoad49 karma

[deleted]

AlbinoAlex79 karma

Yes, it's called nystagmus. I don't notice it and it doesn't affect vision in the way you would think. There is an eye condition where your visual field moves as your eyes move—can't remember the name but it starts with an o. Anyway, I can be looking straight ahead at you the entire time while my eyes freak out.

However, we don't know what affect nystagmus has on general visual acuity.

olivertoad25 karma

[deleted]

AlbinoAlex20 karma

Thanks for asking :)

olivertoad21 karma

[deleted]

AlbinoAlex33 karma

I've met two other people named Alex who have albinism. There seems to be a trend going here.

FrenchFriesInAnus31 karma

is your cock white too with a red head? wouldn't say no to a photo of it either

AlbinoAlex82 karma

Would be easier if I just shared a picture

FrenchFriesInAnus42 karma

god damn it!

AlbinoAlex81 karma

Okay, that was funny, but here's the real deal

AyyItsDylan9421 karma

Why did I click...

AlbinoAlex22 karma

Why did you click?

SpadesInSpace29 karma

Hey, I have vitiligo which is an auto immune disease where pigmentation, melanin, in my body gets attacked and I have white patches around my body. My case isn't that bad but there are people with full fledged vitiligo to the extent people call them "albino".

Luckily enough my vitiligo has not gotten worse, I still have people look and stare at my spots and it does not feel good. What's it like on a day to day basis when people constantly stare an look at you based on your appearance? How do you deal with it?

AlbinoAlex52 karma

Thanks to my terrible vision, I don't actually see people staring at me. Like, I'm too blind to tell where their eyes are looking. It's only with little kids that I can tell, because they make it SUPER obvious that they're staring. But to me, it's just because they're curious.

Think about Abbey & Brittany Hensel. If you saw them walking down the street, you'd stare. But not in an "OMG mutant freaks" way, more of a "well you don't see that every day" because, frankly, you don't. Maybe people who stare at you aren't disgusted or frightened, but curious. I know I would be.

Pipezilla27 karma

Can you get a tan at say a tanning salon? Or is albinism "in the skin" as to not tan?

AlbinoAlex57 karma

I've never tried a tanning salon, but they work in much the same way regular sun exposure does.

In general people with albinism do develop some pigment and some may even have skin that tans slightly or freckles/moles that tan. I've noticed slight tan lines when wearing bracelets or a watch. We just can't sunbathe for hours without worrying about it, we'd sunburn quite quickly.

r3dditje23 karma

Do you have reddish eyes as well? Most of albinism person i hAve seen hAd this reddish colors in their eyes..

AlbinoAlex51 karma

That's weird, but explainable. My eyes are this weird mix of colours, medically documented as "hazel." Most people with albinism have blue eyes. The red effect stems from light reflecting off the blood vessels in the back of the retina. Most people have black/brown pupils because the pigment in their retinas absorbs that light, we don't have pigment in our retinas. But that's under specific lighting, hence the red eye effect in photography. Under most circumstances, a person with albinism will appear to have blue eyes.

MadeThisToFilter21 karma

Did you ever stop chasing Tom Hanks ?

AlbinoAlex45 karma

Found out he was in a cargo plane crash and never found, so I stopped trying.

Though someone else told me he was captured by Somali pirates. That guy will do anything to get away from me!

aSmallRedRadio21 karma

Since I have to ask you a question... Are you wearing that shirt that says "keep out of direct sunlight" to be humorous? (I love how you're wearing that though, it's great)

AlbinoAlex24 karma

Absolutely, I hope everyone who sees it gets the joke.

Shike0116 karma

  1. Do spectacles or contacts correct your vision at all?

  2. Would you consider just for one day getting a light spray tan, colour your hair, colour you eyebrows and wear colored contacts just to fuck with your family and friends? "Hey I found a cure!"

  3. If you didn't have albinism, what colour would you be?

AlbinoAlex30 karma

Do spectacles or contacts correct your vision at all?

There's some slight correction, but nowhere near perfect.

Would you consider just for one day getting a light spray tan, colour your hair, colour you eyebrows and wear colored contacts just to fuck with your family and friends? "Hey I found a cure!"

I would definitely do it for fun.

If you didn't have albinism, what colour would you be?

Brown?

r3dditje15 karma

Last question are u the only one who has albinism in ur family? Or it is imherited throughout all ur family.. Sorry for my bad englishh ✌🏻✌🏻✌🏻✌🏻✌🏻

AlbinoAlex23 karma

You have great English :) I have a cousin in Mexico who has albinism, she's on my mother's side.

redditsucksdiscs9 karma

What can we do to make this world a better place for you?

AlbinoAlex64 karma

Please drive as if pedestrians have the right of way, regardless of how much of a rush you're in.

sniperman3578 karma

Do you get sun burns not during the summer?

AlbinoAlex13 karma

I can get a sunburn at any time after enough sun exposure.

IllMasterminds6 karma

What's the best/worse things about being albino in this cruel world?

AlbinoAlex37 karma

Best: Being incredibly unique. Why be "normal" when you can stand out? And getting to attend conferences :)

Worst: The visual impairment. Just not being able to see what everyone else sees.

IllMasterminds3 karma

Thanks for the answer my good man, i didn't remember albinism came with visual impairments. Basically you see different colors than us?

AlbinoAlex22 karma

It's kinda hard to explain. I see the same colour range. I just don't see things as... clearly? Refined? as you do. It's like, your vision is 1080p, and mine is 340p. Still good enough to see what's going on, albeit it not as sharp or detailed.

Sxhpott16 karma

Do you eyes look pink?

AlbinoAlex22 karma

No.

Sacdabeesh11 karma

I'm laughing to myself that someone downvoted you lol.

AlbinoAlex10 karma

Lot of people salty about these AmAs. Trolls basically.

samithedood5 karma

How does albinism affect your vision? I assume it's something different to short/long sightedness.

AlbinoAlex10 karma

In terms of actual function, it's hard to explain without writing a novel. In short, my vision is not as sharp or detailed as someone with 20/20. So like, think video resolution. A normal person has 1080p, I might be around 340p. Still good enough to see what's going on, but not as refined as 1080p—so you miss a lot of small details.

As for what mechanisms of albinism cause the visual issues... we don't know. There are a host of eye problems in albinism, each with fancy medical names. But which ones cause the most issues and why albinism causes visual problems in the first place... we have no idea.

busty_cannibal4 karma

Have you ever dyed your eyebrows so you could look more normal? A guy at my highschool used to dye his eyebrows and wear contacts, and no one knew he had albinism until he told everyone.

AlbinoAlex6 karma

Never. I'd be kinda scared it going wrong and screwing up my eyes—they're bad enough as it is!

xtraordinaryshitpost3 karma

Do you listen to brother ali?

AlbinoAlex6 karma

Not actively, but he has good stuff.

davidjricardo3 karma

What is your favorite cookie?

AlbinoAlex14 karma

Chocolate chip.

Wait! No, peanut butter. Chewy peanut butter.

TheFannyTickler3 karma

I've seen a lot of your responses have to do with impaired vision but none go into much detail, what does albinism do to your vision?

AlbinoAlex3 karma

That's, in part, because it's a long and complicated answer. In short, functionally, I have rather reduced visual acuity. Think of it like playback quality. Someone with 20/20 vision has 1080p vision, whereas mine is comparable to say 360p. Still good enough to see what's going on, but not sharp enough to pick up on finer/smaller details.

This video does a fantastic job of explaining what a person with albinism can see, and is directed at people who do not have albinism. But as you can see, it's an hour long! I highly recommend watching it, but feel free to ask any follow up questions you may have :)

TheFannyTickler3 karma

I will definitely watch that when I get the chance but I'm on vacation now so it may not be for awhile. How about seeing colors? Does it affect that in anyway?

AlbinoAlex5 karma

Not at all, thankfully :)

For_The_Fail3 karma

You mention the struggles of dating. Could you elaborate on that?

AlbinoAlex9 karma

As much as few people want to admit it, looks matter. It's a lot harder to get a date when you're unattractive. Look at Tinder, you decide whether you'd date someone based on a picture and brief bio.

For_The_Fail9 karma

Well, I think you're really handsome. Best of luck out there!

AlbinoAlex7 karma

Well thank you, I wish I could feel that way. It's not as bad as I make it out to be and, in general... if someone decided they wanted to date you primarily because of your appearance, would you want to date them? I know I wouldn't. Personality seals the deal, but looks still grab attention, so I'm still at a disadvantage.

For_The_Fail4 karma

The blonde is really charming, your face is symmetrical, I can't understand at all why anyone would turn you down for your looks on any regular basis. I know looks matter, but you really aren't Igor.

AlbinoAlex4 karma

I don't either, but I'm not really itching to start dating again so... it'll happen when it happens... if it happens.

Tsu-Doh-Nihm3 karma

Do people with albinism often color their hair or use spray tan?

AlbinoAlex5 karma

It depends, some do and some don't. There's this family in Australia where two children have albinism. One of them uses spray tan and dyes her hair and such while the other doesn't.

Nigan42 karma

Do u see everything in black and white?

AlbinoAlex3 karma

No.

opticscythe2 karma

what do you think about a hunger games type scenario where a bunch of albinos get dropped of in the african jungle and have to fight witch doctors?

AlbinoAlex5 karma

Do we get... what do they call the free weapons they get mid game? Donations or drops or something? Do we get those?

A sunscreen drop would be fucking fantastic!

Message_ahead2 karma

What SPF sunblock do you have to use? Do you burn easily? What are some of the complications that come along with your condition?

AlbinoAlex5 karma

I don't have to use a particular SPF. In practice, SPF 30 is good enough for everyone, including myself. I do have SPF 100 because it's funny, but 30 works fine.

I do, given enough exposure.

Aside from easy sunburns, there's a quite profound visual impairment associated with albinism.

DiscardAndDisco2 karma

In your experience, what are the upsides to having albinism, both big and small?

AlbinoAlex3 karma

I would say just being incredibly unique. And all the awesome experiences like attending conferences, participating in clinical research, doing AmAs, writing for a magazine... so many amazing things I'd never be able to do if I didn't have albinism.

There's nothing fantastic about albinism at its core, it's a genetic disorder after all, but you can definitely make the best of it.

GaryBuseyLawnChair2 karma

Have you ever had to initiate the albino code?

AlbinoAlex3 karma

A few times, actually, mainly at conferences.

eljefino2 karma

Have you ever based any Halloween costumes around this? You'd be a good Emperor Palpatine, maybe.

AlbinoAlex6 karma

Never, but I've gotten a lot of good recommendations. Joker, Colonel Sanders, etc. If I can find a kickass Halloween party this year, I might try it.

MrMashedPotato2 karma

What would you rather fight - a hundred duck sized horses, or one horse sized duck?

AlbinoAlex4 karma

"One horse-sized duck. The cube-square law means that the legs of a horse-sized duck would be incredible unstable. Easy fight." - CGP Grey

notadouche12 karma

Serious question: Are you even a little racist?

AlbinoAlex2 karma

No.

Roughneck_Joe1 karma

Has anyone approached you for your body parts yet because they give good luck?

AlbinoAlex1 karma

Not yet, but I've gotten some propositions here on Reddit. Sadly, they had really shitty offers.

CleetisMcgee1 karma

What nationalities make up your heritage?

AlbinoAlex2 karma

I identify mainly as Hispanic (Mexican/American).

Ancestrally, we're mainly Native American and southern European.

bringbackthe90s1 karma

do you identify with the character powder?

AlbinoAlex3 karma

I've never actually seen that movie, still waiting for it to hit streaming sites.

Narrative_Causality1 karma

Do you have holes in your eyes?

AlbinoAlex1 karma

Like in the physical eyeball? No.

justscottaustin-2 karma

Do you have albinism?

AlbinoAlex4 karma

I do!

justscottaustin4 karma

Alright. Well...I guess that about wraps it up for my questions.

Huh. That was easy.

AlbinoAlex5 karma

Up for a round two?

Oh! Oh! Ask me if my name is Alex.

justscottaustin6 karma

I mean, I would, but I feel like between you and I? We have this beautiful thing. I had a question. I have an answer. I now need to ponder that answer to be sure I truly understand it.

To attempt more would be courting disaster. Nay. I fly not too close to the sun for fear my wings get scorched and hubris leads to my crashing descent from the dizzying heights of knowledge wherein I find myself currently satiated.

Remember me. We'll always have "do you have albinism?"

Shhhh. We will always have that.

AlbinoAlex2 karma

I will always remember that in my heart <3

LordGargoyle0 karma

Hmm... How did you think up such a creative username? There's just such a subtle connection between your name, your albinism, and this AMA... I rate 9/10

Also, kinda stupid question maybe, but would you ever consider moving somewhere (Pacific Northwest, for example) with more cloud cover to get out of the sun?

AlbinoAlex1 karma

I can't remember how I came up with it, but it definitely fits well. Though, I like your username :)

I've considered it. I went to Seattle a few years ago and absolutely loved it. Though strong cloud cover is also correlated with constant rain, which I'm not fond of. Guess you can't have your cake and eat it too.

MrBoringxD-4 karma

[deleted]

AlbinoAlex3 karma

Not that I can recall.

TellYouYourFuture-7 karma

have you considered this condition makes you boring? I'm gonna assume you know how to be more interesting, what do you do besides try to get karma for this?

AlbinoAlex9 karma

Genetic disorders aren't supposed to give you superpowers. In a lot of cases they're debilitating and remove some normal human function that you, day by day, have and take for granted.

TellYouYourFuture-2 karma

answer me, what do you do in your free time that you're interested in, besides this

AlbinoAlex3 karma

Hookers and blow.

TellYouYourFuture-8 karma

answer my question

AlbinoAlex8 karma

what do you do besides try to get karma for this?

Drink heavily and cry myself to sleep in the fetal position.

There. Is that what you wanted? Are you happy now?

Satevah4 karma

When I went to look at the proof picture and saw it was you AGAIN, I felt this was a reasonable question...

AlbinoAlex5 karma

Maybe I misinterpreted what they meant by the question. This is a medical AmA. I answer questions about albinism in general from a medical perspective (i.e. what other people with albinism experience and what doctors say) and my own personal experiences with albinism. Try reading any random medical textbook off the shelf, you'll be bored as shit too. This stuff isn't meant to be mind-blowing, unless you're really interested in it.

It's also a weird judgment for them to say I'm boring. They don't know me. Maybe I drink beer and play video games on the weekends. Maybe I travel the world. Maybe I code full time. I don't talk about these things because they're not really relevant to the AmA.

TellYouYourFuture-2 karma

i want a Real answer, what the hell is your issue.

AlbinoAlex1 karma

Maybe try taking the question in a more respectful manner? Or more specific?

What do you mean what do I do besides get karma? With what? For what?