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Health-LiveI have albinism—AmA

Jan 15th 2017 by AlbinoAlex • 74 Questions • 5270 Points

Hi Reddit!

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

Proof

More Proof

DNA test results

So go ahead, ask me anything.

Q:

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

A:

Absolutely.


Q:

Why haven't you?

A:

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


Q:

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

A:

And it sticks? Does it fade?


Q:

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

A:

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


Q:

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

A:

Makes sense, thanks for sharing :)


Q:

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

A:

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


Q:

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

A:

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


Q:

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?

A:

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


Q:

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

A:

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


Q:

Top vote would be white, probably

A:

Eggshell white


Q:

Leopard print. Then you could be a snow leopard!

A:

Could I then be featured on Planet Earth?


Q:

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

A:

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


Q:

That's fucking crazy. Why specifically albinos?

A:

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

I wish I was kidding.


Q:

Well... Do you have magical powers?

A:

...no comment.


Q:

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

A:

It would be even.


Q:

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

A:

But what if they track me down and kill me?


Q:

Hey where do you live?

A:

42 Wallaby Way, Sydney.


Q:

ur the dentist from finding nemo?

A:

I'm actually his sadistic niece.


Q:

What the fucking fuck.

A:

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


Q:

How's your vision?

A:

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


Q:

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

A:

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


Q:

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

A:

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


Q:

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

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

A:

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


Q:

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

A:

Sweet, I should totally get one.

Looks up segway prices Holy shit!!


Q:

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!

A:

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.


Q:

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.

A:

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.


Q:

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

A:

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


Q:

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

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

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

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

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

A:

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

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


Q:

As opposed to nothing?

A:

As opposed to other forms of sun protection or lotion sunscreen.


Q:

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

A:

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.


Q:

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

A:

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


Q:

What is your favorite dinosaur?

A:

Tyrannosaurus rex.


Q:

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

A:

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.


Q:

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

A:

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


Q:

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

A:

Let's do it!


Q:

How about video games? Can you enjoy them?

A:

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.


Q:

How has albinism impacted your life?

A:

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.


Q:

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

A:

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


Q:

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

A:

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


Q:

Hear that bullies? Single these damn kids out!

A:

For science!


Q:

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

A:

Best band name ever!


Q:

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

A:

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


Q:

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?

A:

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.


Q:

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?

A:

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.


Q:

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

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

A:

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

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

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


Q:

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


Q:

Can you jump?

A:

I can!


Q:

Have you tried working in Japanese movies?

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

I had to stress regular there.

A:

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.


Q:

My man

A:

Fistbump


Q:

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?

A:

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."


Q:

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

A:

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


Q:

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."

A:

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.


Q:

"With the accent y todo!" LOL

A:

Spanglish!


Q:

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

A:

Tamales, or those tiny street tacos, carne asada!


Q:

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

A:

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


Q:

What is it like living in Albania?

A:

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


Q:

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?"

A:

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


Q:

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

I need to know this

A:

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


Q:

Need some time to yourselves?

A:

Yes please.


Q:

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

A:

Same with my penis.

Hahaha ha ha... Sobs


Q:

That must be the white in you then.

A:

Sobbing intensifies


Q:

Lmao.....Is the tip white?

A:

My fingertip? Yeah.


Q:

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

A:

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


Q:

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

A:

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.


Q:

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?

A:

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.


Q:

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

A:

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!


Q:

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

A:

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!


Q:

What do you like to do for fun?

A:

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


Q:

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!

A:

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...


Q:

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 😁).

A:

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.


Q:

How has albinism effected you socially?

A:

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.


Q:

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

A:

That makes it sound much sexier!


Q:

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

A:

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.


Q:

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

A:

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