Jan 15th 2017 by AlbinoAlex • 74 Questions • 5270 Points
Would you ever dye your hair and eyebrows a different color to see what you would look like without albinism?
Go ask /r/fancyfollicles. I bet they could point you in the right direction!
I didn't know that sub existed! Definitely posting there after.
I mean you don't have to pick one, just go with temporary dye so you can change it whenever you want!! Except for Splat! brand... They say they are temporary but seriously, their reds and pinks NEVER go away. They turn highlighter pink and never come off. xD
I've heard good things about... I think it was manic panic, can't remember if they make temp though.
I know a girl who is also an abino and tints her eyelashes and eyebrows a bit darker, it looks good but honestly I don't think she needs it! I have always been so jealous of her blonde blonde hair though. Would you say that being albino has hindered you or enabled or not affected making social connections with people? Also the girl I know has these cool purpley eyes. Do you have this too?
Albinism hasn't hindered me in making friends but it's hard to say if that's the case with dating. So much emphasis is placed on physical appearance when it comes to dating.
My eyes are actually a mix of colours
If this was an actual poll and 4chan brigaded it, what would be the top answer?
Could I then be featured on Planet Earth?
Do albinos really get kidnapped and their bones get sold on the black market?
Yes, but only in certain African countries, namely northern Tanzania.
Hair? Dude, find a witch doctor with an eBay account and start selling him locks of hair for $$$ at a time!
But what if they track me down and kill me?
I don't know man, it's really awful.
Pretty terrible, around 20/400 uncorrected, slight photosensitivity.
I have known one person with albinism in my life. He drove a Segway everywhere.
Therefore, my question is: do you drive a Segway?
No, but I really want one. Do they require excellent balance like bicycles?
Do you have to take any precautions in your daily life to protect your skin, or as a result of your albinism?
PS, nice glasses!
I walk really fast to limit my sun exposure and try to stay in the shade whenever I'm outside. I really should be wearing sunscreen, but it smells bad, takes ages to apply and seep in, and it just doesn't seem worth it when you only need 10 minutes of protection to walk to class.
Why don't you wear a physical sunscreen you can put on in the morning and it lasts all day? Then you wouldn't have to worry about it.
I still don't really trust that brands like Blue Lizard actually do last all day, especially when sweat is involved (the Texas heat is brutal and I regularly walk 20 minutes to class). It's a good idea that I honestly never thought of before, but mainly because I discounted those claims ages ago.
As opposed to other forms of sun protection or lotion sunscreen.
This may sound dumb but when you'll get old, is your hair gonna get gray? Or not since it's already white?
I remember when I asked my teacher that in like middle school, got a lot of good laughs from my class.
Anyway, it'll be white, probably moreso than it is now.
That's making the hopeful assumption you get to keep your hair... =/
If I end up bald, I want a comically shiny head. Like so shiny you can use it as a mirror!
Has albinism stopped you from doing certain things? If so, what things?
Definitely playing sports. I have problems with depth perception and stereoacuity (I can almost never see 3D effects) so tracking moving objects (along with a lifelong fear of being hit by them) makes playing sports almost impossible. Tabletop games like ping pong, foosball, air hockey, etc. are good, but anything on the field and you're gonna have a bad time. There's a reason I was always picked last for sports teams.
I have to get kinda close to the screen to play, so split-screen multiplayer was never fun (I hear that's dead now, though). My cousins would always complain that I got too close to the screen and blocked their view.
Single player? I played the shit out of The Sims when I was a kid. Halo, GTA, Max Payne, Simpson Hit & Run, etc. Today I don't have a console or even a TV, but I play Minecraft and GTA San Andreas on my iPad mini when I get a chance. And Sim Tower.
That's actually an interesting question. In many ways it has and in many ways it hasn't. For daily life, obviously I look WAY different from everyone else, but it's never in the back of my mind anymore. The vision problem are a little less easy to ignore, but with monoculars and accommodations it's pretty easy to get around and still be successful in school.
Over my entire life? I'd never have experienced albinism conferences and research opportunities had I not had the condition. But I can also still travel, go to the beach, attend outdoor events, etc. With some extra precautions obviously, but it's not like I'm unable.
Definitely. You kinda look like a lot of people i know in Sweden. Nothing weird at all to be that bright.
I should totally move there, especially with the impending doom that will surely come with our new president.
I'm very fair with light blond hair, you say you have to take extra precautions for outdoor activities, are they different than the precautions I have to take?
I don't do much other than avoiding going outside unless I have to, staying in the shade as much as possible, and wearing sunscreen when I know I'll be out for long periods of time. Large brimmed hats and long sleeves are also options, but not ones I use.
I spent some time in East Africa and I was so surprised to find how frequently you saw albinos around town! Do you have any idea if albinism occurs more frequently there or in any specific countries and why? I thought, maybe it's the same frequency, it just stands out much more in a country where everyone is black. Any thoughts?
I wrote an article on this, I should know it!
The highest incidence of albinism is in the San Bias region of Panama, but OCA 2 (type of albinism) is most common in parts of Africa. I'm pretty sure the incidence of albinism is higher in Africa than other continents (obviously higher than Antarctica) but I'm not entirely sure why.
I can't see it in the proof, so, are your eyes red?
Edit: Wait, I just remembered that maybe I can't see it in that picture because I'm colorblind
Have you tried working in Japanese movies?
I can totally see you working in Japanese regular movie industry.
I had to stress regular there.
Never, though if you know a guy who knows a guy who casts for those, I'd be down.
Even if it's irregular Japanese films. I'm not gay, but $20 is $20.
Do you know another person with your disease condition? Did you ever share your experiences with someone who knows first hand what you're talking about? If so, how did you feel about it?
I've met loads of people with albinism. Every year, there are these conferences for people with albinism (and their families). Usually 100 - 300 attend depending on the event. I could go on for ages about how incredible they are, but they're best summarized by someone who went and said, "For the first time in my life, I felt normal."
So ethnically, are you a black or white dude? If black, have you ever had a weird moment when you get into a group of white dudes, something racist is said, and then you're like "eeeeeh, double agent here fam."
Oh man, I'm having flashbacks to the last AmA where there was a long argument over the difference between race and ethnicity and where caucasians came from... it was bad.
Anyway, I normally put down white for race and Hispanic for ethnicity. My parents are both from Mexico, ancestrally I'm mostly Native American and Southern European.
It's really freaky for people when I speak Spanish, especially fellow Hispanics. They just think I'm another white guy and BAM! Fluent Spanish with the accent y todo! Most people I meet, not just Hispanics, think I'm just another white guy.
Tamales, or those tiny street tacos, carne asada!
NOAH actually proposed a challenge where you had to answer two questions:
- What do you want the world to know about living with albinism?
- What message or words of wisdom would you share with a young child with albinism or the parent of a newly diagnosed child?
The catch is that you could only use three words. I think my answer was "it gets better" or something like that.
Here are other people's answers
It sucks. We don't get any of the cool American TV shows like Jersey Shore.
What color are parts of your body that vary by pigmentation in non-albinics? I guess what I'm asking is, "is your butthole brown?"
I don't know, I can't see it.
He has terrible vision, he'd need to hook a telescope to his ass to see.
Same with my penis.
Hahaha ha ha... Sobs
How often do you find yourself explaining albinism? What common misconceptions do you always find yourself explaining?
Just these AmAs, which is part of why I do them. It's very rare to be asked about it in public. Even friends/classmates rarely ask about it.
By far the most common is the myth that all people with albinism have red eyes. I've had someone tell me that I don't have albinism because I don't have red eyes. Second isn't truly a misconception, but a lot of people are unaware of the severe visual impairment associated with albinism.
Hey great ama! Have a couple of questions. Will your vision get worse with time or will it stay the same? Does cold weather affect you differently?
People with albinism are still susceptible to cataracts, macular degeneration, etc. But overall, my vision won't get worse due to albinism alone even with age.
Albinism makes me impervious to the cold! :P As far as I'm aware the condition doesn't change how a person is affected by the cold, I've just gotten used to cold weather to the point where I seldom wear a sweater, even when it's 30º out.
Can you watch Always Sunny in Philadelphia or are you too sensitive?
I've been meaning to watch that entire show. I saw the D.E.N.N.I.S. System episode and fucking loved it.
I got my box of Magnum condoms, and my wad of hundreds!
Have you heard of this chick? She uncovered a fetish for albinos I never knew I had.
I'm sure she's been covered by AI or Positive Exposure at some point. I just can't quite remember. But she's cute, totally following!
Reddit, all day every day.
Seriously, lots of Reddit, TED talks and TEDx events, watch documentaries. A lot of indoor activities, as you can tell :P
What are the medical effects you suffer from this? And how was your school life being an albino? Were your classmates nice or were there some assholes in there? Cheers!
Albinism, medically speaking, is primarily classified by a severe lack of pigmentation. This affects visual acuity to a degree, which varies from person to person.
I grew up in a small town and with all my classmates. The people I walked with on my high school graduation night where the same people I played in the sandbox with in pre-K. So they were all well used to me and fairly nice. Though I've heard some horror stories...
I care for a little girl with type two ocular albinism!! What challenges did you face growing up? Did people make fun of you? I just want to know what I should be prepared to help her through (besides applying thick layers of sunscreen every 45 minutes in the summer 😁).
Not many other than just staying out of the sun. I wasn't bullied often thankfully. Oh and not being able to see the board in class.
Lauren Berglund has does a great series of videos for kids with albinism and their parents. Watch it and feel free to ask any follow up questions you may have. I'm about an hour behind on answering questions but I'll be here all day.
Interesting question. I have no problem making friends or exploring cities or really interacting with society. However, the terrible vision makes it hard to pick up on nonverbal cues. Easy sunburns mean I can't just go for a spur of the moment outdoor picnic or concert or even conversation. Shade or indoors.
First off I know nothing about albinism. Can you get a sunburn? And are they severe?
I can get a sunburn, much more easily than most people. I've never gotten a sunburn that blistered, the severity is the same as it is for most people, it's just that I can get them more easily.