I have albinism—AmA

First off as a fellow albino living in California I'd like to say despite our troubles with sight and higher chances of getting sunburns we are a unique and might I add gorgeous human beings so don't let anyone else tell you otherwise.

For my question do you find more albino males or females, because I've only meet albino males and I would like to meet an albino female, hang out, reproduce, create a master race of albinos, take over the world. Shit like that.

We are. As the community says, dare to be rare.

Um... we've discussed this one a lot. I've personally seen more females with albinism. I've asked the expert on the condition, but he didn't respond. I know PLENTY of females with albinism. PM me if you'd like some information ;) The catch is: I want in on this taking over the world.

Are you a black white guy or a white white guy?

I'm actually Mexican, but I'll pick white white guy.

Is Mexican a color now?

When I was in World History, we were watching a film on African apartheid. I can't remember who was on the stand, but the judge asked "Why do we call black people black if they're more brown than black?" The man responded, "Why do we call white people white if they're more pink than white?"

You're handling the weird questions here like a boss. I've got a feeling everything's going to be all white.

When you say AmA, you're going to get those. And, generally, it's just plain curiosity. You can't blame people for being curious. You're correct, everything is all white.

What is the biggest misconception about albinism you've found?

That we all have red eyes. I can't tell you how often I've heard, "You're not albino, you don't have red eyes!"

The one albino girl I knew at highschool had to wear dark glasses due to light sensitivity, but she had blue eyes. Is this the case for yourself also? And, is the photophobia why you are classed as legally blind?

(Thanks for the response, and for the AMA :) )

I'm somewhat light sensitive. I squint when it's a bright, sunny day. But the problem with photophobia is that they experience pain when exposed to bright light. I don't.

Photophobia is one of the symptoms of albinism, but I'm legally blind because of that eye chart with the giant E at the top. I can't even see the big E...

My eyes are a blue/green mix with a yellow center, because of pigment in my iris. That pigment prevents me from being photophobic. Here's a picture:

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

Just gotta say, your eyes are gorgeous!

Thank you :)

I've gotta admit, I thought that when I saw the pictures, and figured it'd get answered here.

I'm surprised people haven't asked if I have red eyes yet. There are plenty of misconceptions but that's the main one that really gets old after a while.

Do some albinos have red eyes or is it entirely a misconception? I am referring of course to humans because clearly most other albino animals seem to have red eyes.

Most people with albinism have light blue eyes (light blue being the least pigmented colour).

Have you ever thought of teaming up with a 1 handed dwarf and using superscience to battle The Guild of Calamitous Intent?

On a serious note, are you offended by the fact that most fiction, whether it be film, television or literature tends to stereotype those with albinism into villainous roles?

I have not, I'll put it on my to-do list!

I'm not really offended by it, but it just gets old after a while. The sad part is that there really aren't films that portray albinism in a good light. They just all pull the evil albino joke. The albinism community HATES it with a passion.

Powder. I consider him more of a hero than anything else.

I REALLY should see the film before I make comments about it but... a fashion photographer who now takes pictures of people with rare genetic conditions once slammed Powder. I think he said it was bad because the guy had albinism because his mother was struck by lightning. Again, I should probably see it before I talk about it. And someday I will.

Do you have moles or other skin things that are a different pigment than the rest of you? Dark/light spots? ...and...I feel horrible and dumb...are your pubes all the same color as your hair? Sorry, just really curious! :(

Yes, several on my hands and arms that are sort of light brown.

Don't feel bad, I said AmA :) Yes, they are.

Couple of questions...

When you were a child were your peers more cruel or curious?

Did that shape what you want to do as a career?(I saw that you want to be a child psychiatrist)

Is there a history of albinism in your family?

If I recall correctly, they were pretty neutral. I don't remember being bullied very often, but no one asked questions. They probably just threw around theories amongst themselves.

Well, it definitely limits what I can do for a career. But I just like helping people, so mental health is a great path. And since all you need to do is sit in a chair and listen and give advice, I can do it!

We think my great grandfather had albinism. There are no photos, but everyone says he had blue eyes and white hair. I also have a cousin in Mexico who's a little older and also has albinism, but that's it.

How is your love life?

Pretty awful. It's really hard to date when you look different from everyone else, because we live in a society that places a very heavy emphasis on looks.

Edit: Thank you SO MUCH to whoever gave me gold! I have no idea what gold is, or what it does, but gold! I think this is very appropriate considering that I live in the golden state.

You just need to start a rumour that an albino's semen has magical properties.

I need someone famous to start the romour. It would spread better that way.

Really? I'd think people would be drawn to the exotic. I am, anyways.

You're probably just as rare as I am :P

Are there any other medical side effects to having albinism besides the lack of colour pigment in your body?

Visual impairment. Most with albinism are legally blind, someone are just above the cutoff. However, some have relatively good vision, and I've heard of someone with albinism with 20/20 vision.

Are your eyes correctable to 20/20? Also, do you have any form of color blindness?

I can get up to 20/20 with a monocular, but not with regular glasses. No colour blindness, thankfully :)

thanks for the reply :)

You're welcome :)

I don't have any questions, but you seem like a very nice and positive dude. Have a great day!

Thank you :) You too!

Is the stories about medicine men offering huge money for Albino's bones true? If you were strapped for cash would you consider it?

Yes. In Tanzania, witch doctors who make potions that apparently make you rich or whatever do. They use body parts to make them. Limbs, mainly, but also skin, hair, blood, etc. It's a huge problem that has even gotten the attention of the UN.

I wouldn't do it simply because it'd be supporting the horrid, horrid crime. Plus, I could always make money by selling my junk on eBay :P

No, but seriously, I'd become immortal if I ate you wouldn't I? Don't lie to me.

Yes, but you MUST eat my left arm. The right arm just makes you rich. Each part has its own magical power.

What sort of magical properties do your legs have?

The left one gives you super strength. The right one gives you super speed. Take your pick.

I am now tempted to do an AMA titled "I have gingerism"

I have bright orange hair and pale skin. I hesitated though, because the thread would die after "Do you have a soul?" and "Does the carpet match the drapes?" etc.

Do it! I mean, you're going to get stupid questions, that's just it. But I'm sure there are plenty of people with legitimate questions. I have a few myself :)

What color are your nipples?

Light pink? It's kinda hard to see, believe it or not.

You are funny. Your sense of humour has really made this AMA entertaining, as well as educational. This might be a shallow and vapid question, but I'm curious. Are you attracted to people with albinism?

Thank you :) Um... somewhat. I've dated people with albinism before and the connection is just indescribable. But I don't really pursue people with albinism more or anything.

Does it irritate you when people assume that someone or something has albinism just because of their pale complexion?

Somewhat. I'll have people tell me that someone they know has albinism because they're really pale. I even had someone tell me that someone they know "used to be albino." Sure, we're both pale. But I'm blind, they aren't.

Since you're Mexican (and I am hispanic too) I was curious, what your parents have told you about their reaction to your albinism when you were born?

I think I remember them saying they were shocked. But overall in the first year they were just really scared. Because they didn't know what caused it or what it meant to have albinism or what would happen. And they were SO scared when they found out about the vision part. And that part really broke my heart. I hear a lot of these stories from new parents of children with albinism, and I'm glad there are support groups now.

Does being an albino Mexican give you an insight into race/prejudice that others might not see? Do people treat you like a 'white' guy until they find out that you're Mexican?

Somewhat.

ABSOLUTELY! No one ever believes I speak Spanish, ever. They always think I'm just another American. My favourite part is when people talk about me, out loud, right in front of me in Spanish because they think I can't understand them.

Does the albino code actually exist?

I don't think so. We should create one!

What are the odds that you will have a albino child? I think you are handsome, btw.

If I have kids with someone else who has albinism, the odds are 100% (Yes, every single child) the child will have albinism. However, if that person has a different type of albinism than mine, than none of the kids will have albinism, but they'd be carriers for both types.

If I have kids with someone who doesn't have albinism, the odds are 50% if they carry the gene for albinism, and 0% if they don't.

not to sound mean but have you ever dyed your hair? I've always wondered why albino people don't dye their hair?

I have not, personally. But people with albinism do dye their hair—I know several that do. My best guess is that those who don't are happy with who they are, and see no need to change it.

Yeah please never do, your platinum afro must always remain.

Then so it shall be.

Can I touch your hair?

Dat afro...

It's so big because it's full of secrets.

Does it know anything about HL3?

HL3 is coming in... in.... damn! Just lost it! Ask me again tomorrow :)

Sure :)

Is it true that its hard for albinos to go outside because the sun hurts their skin? I forgot where I heard that from.

It doesn't necessarily hurt our skin just going in the sun, but we do sunburn a lot easier than everyone else. The skin cancer risk is much higher, too.

You're one of my people. I'm albino as well only OCA2 though.

Hooray! :) Hey, albinism and albinism.

[deleted]

OCA 2 is a type of albinism, there are four. And it doesn't make him ant less of a person.

Have you ever wished you didn't have albinism?

When I was younger, but I don't anymore.

Thanks for answering man. Good luck in all of your future endeavors!

You're welcome, and thank you :)

would you rather be albino or ginger?

I'd rather have albinism.

As a ginger, I was momentarily offended...but now I shamefully agree. I'll be going now.

It wasn't really that albinism is BETTER or anything, I didn't make a mental comparison. I picked albinism because I already have it.

What do plan to do for a living?

I'd love to be a child and adolescent psychiatrist. If that doesn't work out, I'll go to graduate school and become a psychologist.

You have nice hair.

Just wanted to say that

Thank you :)

I have a pretty rare condition myself (arterioveinous malformation in my leg) and I find it so frustrating that there is next to nothing known about my condition.

What's the most frustrating thing about albinism?

When I was a kid, it was the same. No one around here knew about albinism. No one could answer my questions. Post-conference, I've become an expert in the condition. I do SO MUCH research.

Now.. probably the social implications. It's hard, socially, when you stand out.

Are there Albinism support groups/conventions like there are for Little People? If so, do you attend? Are you active in the Albino community?

Oh yes. There's the National Organization for Albinism and Hypopigmentation (NOAH). They host conferences every two years. I attended the last one in St. Louis and I'm going to the one in San Diego next year. The Albinism Fellowship of Australia also hosts conferences, and I'm going to Sydney to their conference this October.

I try to be as active as possible. In research, in event attendance, in public awareness, etc. NOAH publishes a quarterly magazine called Albinism InSight, and I write for it every single quarter.

Do people stare it you often? You hair is pretty unusual (not bad!) and I would imagine you could stick out in a crowd. Do you let it bother you? Do kids ever ask you weird questions?

Your legally blind? That SUCKS dude.

I'm told that when I walk down the street, EVERYONE in a passing car stares. But being legally blind, I don't notice. I definitely do stick out in a crowd, which is why I hate when people tell me to find them. It's like, dude, find ME! Way easier! I did think about it when I was walking through a park yesterday, but the way I see it... when people stare, it's because they're fascinated. So, say you saw someone on the street with like three arms or someone. You'd stop and stare because you're thinking, "Whoa! That's weird!" You're not staring because you think the person is a freak. Hmm... kids never really ask questions.

It can have its pros. I get to cut lines in places, I never have to do jury duty, and I get priority registration for classes at my college. But, the not driving part does suck.

Legally blind doesn't mean that he cannot see at all, although that could be the case and it would still suck even if he is not totally blind. Honestly I am replying in the hopes that OP can see, just not well enough to drive. Don't want the guy to be totally blind.

I'm not, thankfully. I'm actually 20/400, which is sort of close to the borderline. I actually probably could drive in a different state, but not in mine.

You mentioned above that there are different kinds of albinism. How are these classified?

They're classified by the gene that causes the albinism. TRY, OCA2, TYRP1, and SLC45AZ.

How do you prefer to be referred to? Is "an albino" offensive? Should I always refer to people with your condition as just "people with albinism"? And finally people with albinism are often portrayed as evil in the media, how do you feel about this? Thank you!

People with conditions generally like the "people first" use. "Person with albinism" is generally better, and is used by NOAH. "Albino" is accepted in Australia and the UK. It just depends. Some people HATE it with a passion, others will call themselves albino. I don't really mind, but I always use "person with albinism" just because, again, there are some that HATE the alternative.

Yes, the evil albino card is player over and over and over again. I don't really mind it, personally, I just wish there was a balance.

Are there any major set-backs that you have because you are albino?

Vision, mainly. Being legally blind means I can't drive in my state, I have a hard time seeing the board in class. I sometimes bump into the most obvious things. I just have to get really close to everything.

Is it creepy that I find albinism to be kind of a turn on? (I'm not hitting on you, don't worry. I'm a lesbian!) Have you met other people who feel this way? What have relationships been like for you?

Not really. Everyone has their own turns on and fetishes and whatnot. Free country. But I haven't met anyone else who feels that way, pretty interesting. Relationships, and dating in general, have always been difficult.

This is a weird question, but I was wondering, ginger pale person to you, if they have any sort of makeup foundation for albino people. because i use like the lightest shade.

I don't know of any makeup like marketed towards people with albinism, but I've met plenty of people with albinism who were able to find makeup just fine. The fun part is challenging the cosmetics person to match you. It takes ages! :P

What are your superpowers?

No seriously, how has being am albino affected your identity? Was/is it a big part of who you are?

I see dead people...

It is in a sense that I wouldn't change it even if I could. But I try my best to live life as normally as possible. Albinism identifies me, it doesn't define me.

OCA Type 1?

We're pretty sure I'm type 1B. Researchers at the National Institutes of Health are currently sequencing my DNA to find out my type. I should have the results within a few weeks.

Interesting. The only reason I know about this is because my biology class had to do reports on genetic disorders and I picked albinism. It's a cool topic.

When I was in Life Science, we did the same, and I also picked albinism. Easier paper ever :P

Are there any cool benefits to being albino?

Just being really really unique. The global occurrence is one in every 20,000 people.

Are you pale all over or are your goodies a shade darker?

Also, are your palms and the bottom of your feet a shade paler than the rest of your body?

It's pretty much white all over. My palms are more red than darker (colured). When I was at NIH, they used a reflectometer on my body to see how "white" parts were. I don't have the results, though.

My nephew is albino and is unfortunately mostly blind. Do you have any tips for the family? Or him for when he's old enough! Here he is: http://i.imgur.com/nFU3DaB.jpg

Contact the National Organization for Albinism and Hypopigmentation immediately. They have SO MUCH. Groups, conferences, books, just so so much.

When did you first find out you were living in Albania?

When I was six and I read about this show called American Idol. I turned on the TV, but only managed to catch Albanian Idol. I was sad.

someone find the picture of the cute asian albino that did a ama...she was purdy.

found it!!! http://en-us.reddit.com/r/IAmA/comments/16g6d7/iama_21_year_old_asian_girl_with_albinism_ama/

Aww! She's adorable! I hope she goes to the next conference.

What would you say are the most negative and positive aspects about your disorder?

Positive would probably be how rare the condition is. I like being unique :) And it's a lot of fun to answer questions about it.

Negative, aside from the skin and the vision and whatnot, would be the limitations of it. I would love to just go out on the beach for a day and tan like everyone else, but I'd just burn to a crisp. I can't drive, legally. It's also hard to fit in because not everyone accepts people who are different.

If there was a "cure" would you take it? Why? (Personally, I wouldn't)

There might be a cure, eventually. Nitisinone looks promising. But either way, I wouldn't. Albinism is a part of who I am. I've grown up with it and adjusted to it. Dare to be rare :)

How's it going? Are you allwhite?

Fine, enjoying this AmA. Yes.

Are you magical?

I am. I can solve a Rubik's Cube :)

Here's a question that is important to me, do I have albinism?

Obviously, I am the very excited guy. http://i.imgur.com/Lm9PFoS.jpg

Here's me with Reed Timmer a couple years ago http://i.imgur.com/aB5GZ14.jpg

I have been bullied a lot through high school and even now into college. I am constantly called albino, whitey, q-tip and others that I can't think of now. I have never really had a problem with getting a decent tan (only on the arms and face because I am a gaming nerd) during summer, so I am not sure if I am not just a guy with really blond hair.

I'm not an expert at all, but I don't think you can get a tan if you have albinism(which is a lack of pigment.) you're probably just really pale:) I know of one albino guy that runs for another school at some of my track meets, and he has to always wear sunglasses and a hat because any sun exposure is very dangerous for him. So you probably aren't:) but again, I'm no expert.

You actually can. OCA 2 and 3 involve having pigment, but not as much as your parents. OA 1 is the same thing. That's why you also use visual indicators when diagnosing albinism.

So, any contact from the Vatican yet?

Not yet, maybe when I visit Italy and rome around for a bit.

Isn't your AMA supposed to be after the mulatto and before the mosquito ?

I hate mosquitos.

Can i touch your hair?

Sure :)

Can you control electricity and read people's minds?

I can only control electricity. When I was in the womb, I had to pick between controlling electricity and reading minds... I still kick myself for picking stupid electricity.

What happens when you get sunburn or try to tan?

I sunburn when I try to tan. The worst sunburn I've had was just really red skin that hurt to touch. Never had it blister, thankfully.