I have albinism—AmA

What is your ethnic background? Do you know if albinism is more common in some races and less common in others? In middle school we had a black girl that was albino. I didn't know her because she was 2 grades below me so I never got to know her.

I'm Mexican American. I vaguely recall reading that albinism is most common in a region of Panama, but I have no idea which ethnicity has the highest occurrence, sorry.

Have you ever considered dying your hair? You'd look totally 'normal'.

I did for a while, and very strongly considered it during my senior year. However, I've heard our hair doesn't retain dye very well due to the lack of pigment. I went to a local place a few weeks ago and they said they can't dye my hair. For now, I'm keeping it the way it is.

Love your hair ! Don't change it. It's gorgeous.

Thank you :) I also fear dying it because I hear dye ruins your hair because of the chemicals and mine is nice and soft and I wish to keep it that way.

I have an albino friend and he's dyed his hair black, green, and tons of weird colors for the hell of it. It works but IMO it looks much better white

It does work and the colors stand out beautifully but... yeah, it's better natural.

I'm Puertorican American and you are very cute btw ;P hehehe..Thank you for doing this!! :)))

Thank you :)

Jeffersonville?

I can't find the name of the region, but it's definitely in Panama and the incidence is 1 in every 125 people (compared to 1 in every 20,000 globally).

I believe you're talking about San Blas or Kuna Yala. The albino children there are traditionally called Children of the Moon.

There it is! It's the San Bias region.

What are the pros and cons of being born with albinism? (ps. I think it's awesome)

There aren't many pros, unfortunately. I'm pretty unique (the global occurrence is about 1 in every 20,000 people). When I meet someone else with albinism, the connection is just incredible.

Cons: I'm legally blind, I sunburn in a nanosecond (Not literally, but I can't tan), I don't fit in, dating is just awful, I'll never be able to drive... the list goes on. Though, I don't see it that way. I've always taken a positive view on it all. One of those "I can do anything I set my mind to" inspirational ones you always hear about.

I sunburn in a nanosecond (Not literally, but I can't tan)

As a person without albinism who has little to no melanin in my skin, I know that feel. My personal record is two minutes before burning.

It ultimately depends on your definition of a burn. I consider myself sunburnt when it hurts, and my record is four hours without sunscreen. Some people consider skin redness with no pain a sunburn, and I probably get lots of those—I just don't pay attention.

I really don't like telling this story but I might as well. When I went on my 6th cruise last year, I wanted to get a really bad sunburn because that's like my version of a tan—and I wanted to get it to prove I went on vacation. I went through two ports of call without sunscreen and was just fine. I got off at the third and my neck hurt SO BAD! And that's when I stopped and applied sunscreen for the remainder of the trip. It was still a success, because I came back with some color (imagine me with red skin, sexy huh?) but it still hurt quite a bit. A stupid idea, I know.

It ultimately depends on your definition of a burn. I consider myself sunburnt when it hurts, and my record is four hours without sunscreen. Some people consider skin redness with no pain a sunburn, and I probably get lots of those—I just don't pay attention.

Yeah, same here. It was the back of my neck that got burnt, so I was definitely aware of it. If it's just a little rosy, that could just be me being a little warm.

I don't know what my maximum was. Usually if I plan to be out more than an hour, I cake on the lotion, so it doesn't come up often. I've had to deal with raw itchy peeling skin one time too many.

The two minutes surprised me, though. I was inside and went out into the backyard to check on how my wife was doing in the garden. We chatted briefly, then I came back in. Half an hour later, my neck was hella sore. Only time I went outside that day.

During my first week of college, I got sunburnt. It was weird because all I did was walk around campus between buildings, and I sat outside (but in the shade). For the next two weeks or so, I started applying sunscreen every day. That got VERY annoying for just ten minutes or so of sun exposure, so I stopped and just limited my time outside.

It's a delicate balance because you need to get sun to get vitamin D, but you need to limit your time so you don't get sunburnt, and you also need to cake on the sunscreen if you're going to be in the sun for long—but if you end up not being there for long then the sunscreen was for nothing and... ugh! Applying sunscreen is also so annoying because you REALLY need to cake it on and then it takes ages to seep in and... ugh!

Have you tried any of the spray on sunscreens? I burn really easily and found it be much better than any of the creams I've used. I've tried a few different brands and my personal favorite is Aveno brand sport SPF 50. (The "sport" aspect is that it is sweat proof.)

An expert on albinism recommended against it because, while it is convenient, you likely have poorer skin coverage with it. There are concerns about inhalation, and it's more expensive per dose. Plus, I've heard the spray on stuff is SUPER greasy.

I know what you mean! I'm a special shade of white (my fiance laughs because we met an albino who was darker than me, though it was because she was flushed) and I just hate sunscreen. I've started using an umbrella to shade from the sun while walking around school and I just get weird looks. Oh well, beats having to apply and reapply.

Sunscreen, hat, umbrella, long sleeves—you have many options! I just go out and do stuff without anything because, well, I'm a rebellious person with albinism who don't need no sunscreen. Until I get a bad sunburn and it hurts like hell :P

You realize that a tan is a sign of damaged skin and a burn is OBVIOUSLY damaged skin. With your albinism, you're at a much higher risk for skin cancers. Please don't even get to the "red skin without pain" stage. You're causing yourself irreparable damage.

A tan a natural body response to UV rays by releasing excess pigment to block them. Too much can be harmful, but it's not that bad. DNA can be repaired, but a doctor describes it as patching ripped jeans with clothes pins. I'm planning to start seeing a dermatologist regularly within a few years.

Can you not get Lasik Eye surgery done? I know nothing about the requirements for Lasik. I have been blessed with perfect vision my whole life so far.

No, unfortunately. There is a surgery to correct nystagmus (which is an involuntary eye movement and what's partially responsible for the visual impairment), but only two ophthalmologists in the entire country can perform it. Furthermore, it'll only get you an extra line on the Snellen chart (If it even works. I heard of one guy who's had 7 eye surgeries but is still legally blind). An extra Snellen line would put me at 20/200, which is still legally blind.

However, there are several drug trials with hopes to improve vision by increasing pigmentation. There is a strong clinical correlation between pigment and vision, so researchers in Minnesota and Wisconsin are giving people with albinism L-DOPA with hopes of improving vision. Researchers at the National Institutes of Health are hoping to do the same thing with Nitisinone. I'm REALLY hoping to get into the Nitisinone trial, but we're awaiting the DNA results.

Hmm... Yes.... I understood some of those words.

Only teasing, I'm impressed (albeit I shouldn't be surprised) that you've done so much research on this!

Not only have I done a lot of research, I've actually been part of the research. Earlier this month I flew to Washington DC to participate in a clinical trial at the National Institutes of Health. They did a physical exam, skin biopsy, hearing tests, vision tests, drew blood, etc. etc. More information can be found here:

http://clinicaltrials.gov/ct2/show/NCT00808106?term=Albinism&rank=2

TIL that there is a correlation between pigment and vision.

Yessir! I've got blue eyes and my eye doctors have told me if I walk around in the sun without UV protection glasses I'm basically going blind very slowly. Plus side is I can see in the dark in a few seconds while most brown eyed people still see darkness.

Brown eyes are probably the most evolutionary advantageous.

Agreed. My night vision is better than my day vision—which is funny because most people with albinism that are able to drive are prohibited from driving at night.

Is this why I have so many awful floaters? My eye doctor hasn't said anything about my eye color/pigment putting me at greater risk, just that it was something that couldn't be fixed. I thought it was just another symtom of my extreme nearsightedness.

Floaters only happens when your eyes are exposed to bright direct light like sunlight, a camera flash, or a flashlight. People with albinism usually experience pain in response to light exposure (I don't).

Not an eye doctor so I definitely couldn't say. Wear sunglasses if you have blue eyes though. Or regular glasses, they almost all have UV protection.

Agreed. I don't wear glasses because I don't experience pain when exposed to light, so it's not necessary—and my doctors scolded me for it.

I'll never be able to drive...

Why?

I don't meet the legal visual requirements to drive. My visual acuity is 20/400. Meaning that something that a person with 20/20 vision can see from 400 feet away, I have to be 20 feet away to see. I.e. legal blindness. With correction (glasses) I can get up to 20/200. The acuity limit in California is 20/160. Therefore, I'll always be too blind to drive, even with correction.

:( I'm sorry, mate. Do you use any special stuff to use the computer?

I just zoom into the screen and pan around, pretty basic. Some people with albinism use software that reads everything to them.

Have you considered wearing glasses/eye contacts to drive or does it not work that way?

People with albinism need to use bioptics (like mini-telescopes) to drive, but they have to start at a certain acuity before they can do that. Even with correction, I can't get to that minimum acuity. So yes it does work that way, but not for me.

Have you ever looked into Melanotan II?

Not until now, and it looks interesting. The National Institutes of Health is working with Nitisinone, and I'm hoping to get into that trial.

You can dye your hair any color you WANT. (Had a friend with albanism in college... he'd do the freakiest colors, and they always came out soo vibrant. Once he got some neon green and managed to make his head look like a tennis ball.)

I know I can dye it any color, but will it be retained? And doesn't dying your hair ruin it because of all the chemicals?

I once had a rabbit that was albino with red eyes and his name was Snowballs. He was a dickhead, so we gave him away. Are all albinoes (albinos?) dickheads? Was your nickname Snowballs in school?

Hahahahahaha!!!!!!!!!! Thank you for making my night, that was hilarious!

Um... people with albinism are generally nice but I have met a few that weren't pleasant. I'm a Psychology major and so that part of me would say it was due to trauma experienced as a child. One of them was on True Life, so I'm guessing she was stuck-up because she thought she was better than us.

I don't think that was ever a nickname of mine. Snow white was one. When my hair grows, it curls into an afro. So my college nicknames were albino Napoleon Dynamite and Q-tip.

Man, you seem like a really cool guy. Many people would have reacted poorly to that comment, but I really admire your sense of humor.

When you go to a public site and say AmA, you have to expect that there are going to be rude people. Plus, I'm kinda used to it. And, hey, it was really funny. Not asked in the best way but... funny.

I think fair skin is lovely and am very glad to see you have a wonderful sense of humor. I'm half Native American and half Italian so I go in the sun for 5 seconds instant tan, I use to love it but Ive grown to truly adore fair skin and avoid direct sunlight.

I always like to make jokes that I can blend in with snow extremely well. Along with the joke that "the sun hates me." You just have to have a sense of humor and make jokes about your own condition—it's easier to cope that way.

Hey man, I too have albinism (OCA-2), but I cannot stand the term "albino"... especially when being called one.

1. How are you so cool with calling yourself an albino? I absolutely hate the word.

2. I will also not be driving either. Instead of taking a Drivers Ed class, my school mandated I learn about public transportation instead. Do you just use public transportation to get around, and, if there is a slight possibility I might be able to get a daytime license, do you think it is worth it to get it at this point?

3. Do you go to the NOAH Conferences?

4. Ever have the "Why are you so pale dude? Get some sun." "I have albinism" "No you're not, albinos have red eyes, idiot!" exchange with people?

And thanks for doing this, I had no idea people had so many questions about albinism! Plus, it's nice to know I'm not the only one on reddit.

Hello! Nice to run into someone else with albinism, considering that it's so rare. I have OCA 1, we're pretty sure it's 1B, but we're waiting for the DNA results.

1. I am not cool with calling myself albino, I just used the term because it's what the general public uses. I prefer "I have albinism." and "Person with albinism." I've actually lectured people on the difference and how "person with albinism" is much nicer. It just takes longer to say (and type).

2. I use public transportation, but it sucks around here. I went to Washington DC last year and fell in love with the Metro system. I don't recommend driving. You have to do bioptics and then get a car and then deal with all the expenses of a car and then the risk is higher because even though you meet the legal requirements to drive you're still blind and... I just wouldn't recommend it, but I've met several people with albinism who do drive.

3. Yes. I went to the one in St. Louis last year, and I'm going to the one in San Diego next year. I'm also going to the AFA Conference in Australia this October, and I'm really really hoping to go to the Adults with Albinism Weekend in Portland this September.

4. OMG YES!! It happens at least once a cruise, and even a few times on land. And then I have to explain to them that we don't have red eyes.

Glad I could inform the public and answer all the questions :)

Edited because I missed question 4.

I appreciate you sharing that you prefer to be called a person with albinism. It's good information to know and I have not yet met anyone with albinism to learn! Great AMA!

Most people with disabilities prefer the "people first" language: i.e., person with autism, person with diabetes, etc. :D It's a good habit to get into. :)

Oh, and with little kids, it's often good to apply this even when it is good things.

I didn't know that applied across disabilities, thanks for sharing!

Albeit being publicly and generally accepted doesn't mean the term isn't offensive or awful. My sister has Down syndrome, and while "retarded" is clinically, scientifically, and publicly accepted—I think it's just awful and would NEVER use that term.

It's actually a preference of many and keeps you from offending people. I remember during my third cruise, I was the first person with albinism many had met.

Is there something about being a person with albinism that affects your vision? If so, I never knew that!

A number of things. Nystagmus/strabismus, photophobia, iris transillumination, foveal hypoplasia, absent or reduced stereoacuity (so I can't see 3D), and misrouting of the optic nerves. These things together cause a severe visual impairment, and most people with albinism are legally blind.

I never knew that! Thank you for helping me be a better-informed person!

Remember, though, that not every piece of that affects every person. I don't have photophobia, or complete iris transillumination (I have pigment in my iris). Albinism is not a cookie-cutter condition—everyone has a different level of pigment, vision, etc.

What is the difference between OCA-1 and OCA-2 (and the letters)?

OCA stands for Oculocutaneous Albinism. Oculocutaneous, of course, is a major pain to write out all the time.

OCA has four types: 1 A and B, 2, 3, and 4. There has been paperwork that talks about there being an OCA 5, 6, and 7—but officially it's only OCA 1 - 4. The specific number denotes the cause and level of pigmentation. Albinism has various causes, so which gene mutation causes yours determines which OCA type you have. People who are OCA 2 - 4 have some pigment and skin complexions similar to their families. People who are OCA 1A have NO pigment, whatsoever. People who are OCA 1B (me, possibly) have partial pigmentation, but very very little.

My boyfriend has albinism, and much prefers to be called 'an albino' than 'a person with albinism'. Everyone's different I guess :)

Precisely, everyone is different. Some take an extremely severe offense to "albino" and will mentally murder you for using it. Personally, I don't like it, but I don't hate people for it. On my second cruise, my nickname was The Albino Mexican.

Do you listen to Brother Ali?

"I'm the albino but y'all pale in comparison"

No, I've never even heard of Brother Ali, to Google! I always like to make the joke, "You can't call yourself white in my presence."

Thanks for the recommendation!

How about Edgar and Johnny Winter?

Never heard of them, either. Back to Google I go! I had heard little tidbits about famous people with albinism (including a rapper), but I haven't done much research on it.

Here is a video of Johnny doing horrible things to a guitar. I've seen him a couple times, amazing musician.

Edgar in a time capsule from deep in the 70's. He still gets some airplay on the classic rock stations.

Thank you for your recommendations! One for you: California Christmas by Brooke Fox, who actually ran for the NOAH board:

http://www.youtube.com/watch?v=F-oIRq4AGNs

I highly recommend the song "Forest Whitaker". It is beautiful and I think you could connect well with it.

Thank you, I'll put it on my list and listen in a bit :)

Would you say this has greatly affected your life in some way that non-albino people could not experience? Obviously I'd expect the vision impairment would, so I guess I'm asking outside of that. Perhaps how people react to you, or if only being in the sun 2 hours tops has been a problem, if there are any side effects of the condition that the average person doesn't know about, etc.

I would say the social implications are the toughest. I can't just up and go to the mall or the movies because I can't drive (and I'll never be able to). Dating is also really really difficult. It's always been tough because people without albinism (like my parents and teachers) cannot fully understand what it's like to have the condition—they'll never be able to.

There is an ever rarer condition called Hermansky-Pudlak Syndrome that, on top of albinism, also caused a bleeding disorder, pulmonary fibrosis, and colitis. But albinism albinism (The kind I have, called Oculocutaneous Albinism) is just the lack of pigmentation.

You should come to Sweden, if you live in a city you wont even need to drive, everyone is pale and we don't have much sun.

People with albinism have been frequently asked if they're from Sweden, so it's a running gag at the conferences. As much as this condition sucks, it doesn't suck enough to warrant moving to another continent (but I will have to at least move to somewhere with a better public transportation system).

Thanks for the reply! I do suppose the driving would be the most subjectively frustrating... I am sorry for that. Can you bike? I'm not sure where you live, but I'm just wondering about alternative forms of transportation for you. As for the dating, I say if a girl can't see past your coloration, you need to find a better girl. Finally, at least you don't have that Hermansky-Pudlak Syndrome! I myself have experience with colitis symptoms... let me tell you- You don't want that.

I can bike, as in the vision allows, but I'm not that great with riding a bike. The public transportation system here sucks, horribly. I went to Washington DC earlier this month and their Metro system is AMAZING!! Trains run every few minutes and the system spans all of DC and... I just fell in love with it. It's like freedom for someone like me.

Oh, but I have experienced it, somewhat. I developed these really really awful stomach pains for months, and they got so bad that they landed me in the hospital. I tested negative for HPS, and I saw a gastroenterologist who did a colonoscopy and ruled out Crohn's Disease and colitis. I'm taking omeprazole daily and I'm fine now but... I have to stop taking it at the end of May, and I have no idea how that'll go.

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The locals were definitely very friendly. I've also heard that Europe has incredible public transportation systems. For now, I'm planning to move to Los Angeles because my dream job is there. But I will always have a special place in my heart for DC Metro—the system is just incredible.

In Europe, we do have awesome public transport.

I've seen the tube and the double decker busses in London. I'm really hoping to go next year.

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Thank you :)

Hey, I seriously have a question and am in no way trying to be rude, but I have a friend in one of my classes who is also Albino, and whenever we talk he positions himself so he is about 1 to 1.5 feet shorter than he actually is (like crouching) and looks directly at my face from a bottom angle. I wanted to ask him if it was part of his condition, maybe his eye sight, or a personal quirk, but am too embarrassed to ask, because it really does make me feel uncomfortable. What do you think? Is it due to bad eyesight?

Oh yes. We crouch like that to get closer to what we're looking at so we can actually see it. Everyone's vision is different. I'm nearsighted, so it's not as bad. However, I've seen someone with albinism who literally had his phone pressed against his face—his nose was touching the screen. When you have to get that close to see, you can either pick up what you're looking at or slouch down to see it. Accommodations include a slanted desk or large print—but often times schools don't provide them. My back always hurts after I play video games because I have to hunch over to see the screen, and being in that position for some time...

Thank you so much for your response, perhaps now I won't be so uncomfortable with how he looks at me when talking, we do really have a lot in common and have a lot of laughs in lab.

You're welcome :) Don't fret if he doesn't get your gestures or body language, either. I can't see facial expressions, so i can never tell someone's emotions or if they're rolling their eyes or if they're trying to tell me to go away with body language. It especially sucks when I get to a non traffic controlled intersection at the same time as a car. The driver could be waving me to cross but I can't see him!

What are some (if any) misconceptions that people have about albinism?

There are two very large ones that have a big impact:

1. Hollywood likes to put the "evil albino" in films like Powder, Matrix Reloaded, and even The Da Vinci Code. There are something like 100 films that use this, and it really puts us in such a negative light because the general public doesn't know much about this condition and they go to a theater and see a film with someone with albinism and he's evil...

2. In Tanzania, it's believed that people with albinism have magical powers. So, the local witch doctors hunt down and kill people with albinism for their limbs. It's a huge problem and, while Under The Same Sun is working on it, the killings continue.

There's also the classics that we have red eyes. I remember once hearing that people believed our mothers did drugs. People have asked me if I can see myself in a mirror or if I come out in photographs. No, we are not vampires.

and even The Da Vinci Code

Well, he was albino in the book, so they kind of had to :p

Touché :P

I've never seen the movie, but he was an albino in the book and joined the church because it was the only place he fit in

Neither have I. Rick Guidotti is an amazing photographer who now takes pictures of people with genetic conditions. He was giving a talk and he described the movie part as "the evil albino driving around Paris shooting at people. Of course he's blind so he doesn't hit anything."

Man, you don't like Powder? That movie was awesome.

It was slammed as negative by Rick Guidotti, though I've never seen it.

You should see it, actually. The movie isn't so much about an albino person but someone born very different than anyone else. And as such, people react to what is different with fear, hate, and anger. The main character in question is actually very kind, innocent, and ultimately a mirror to those who lash out at him.

It's not on Netflix :( I'll try to get ahold of a copy and watch it.

Any idea why the red eye myth is so prevalent?

Most people with albinism suffer from iris transillumination—meaning that our eyes light up bright red when exposed to light because there's no pigment to block it (It would be completely dark for normal people). I'm also assuming that plenty of pictures of people with albinism result in them having red eyes (like everyone else). I also hear that animals with albinism have red eyes (like the lovely gentleman down there with the mean rabbit).

You are actually really handsome.

Thank you :)

Are/were you a cool kid at school or were you made fun of? Or was it one of those "we bring it up jokingly but we actually like you" things?

It was one of those "we bring it up jokingly but we actually like you" things. We constantly joked about my poor vision and pale pale skin. No one ever made fun of me, but I was never popular.

That is one crazy fro you are rockin' in the one pic. I understand dating is difficult because teens and young adults can be smallminded and tend ro focus on society's idea of "attractive". Don't you worry, as you get older you will find this is not the case. I mean, if it is genetic, then that tells you people with albinism are not staying single forever ;)

Ha! That is a very good way of looking at it. Fingers crossed that it does get easier as I get older. Thanks for the advice! :)

I'm a very white blonde girl, although I don't have albinism. White jokes can be vicious, and Id hate to have to deal with it like you do. So, my questions are: What in your daily life do you struggle with? What are the reactions of people seeing you for the first time?

Not much daily. I have an iPad and a monocular and a phone and a magnifier and a bunch of wonderful stuff to help me out. It gets tough to take notes in class sometimes. However, struggles do come to light when I realize I'm single. Or when I want to go to the Apple Store that's half an hour away but I can't because I can't drive.

Thankfully, I haven't run into many negative reactions. I remember one girl screaming "Oh my God, you're albino! That's so cool" as I was walking around campus. Friends who accompany me always say that people stare. I've talked to many people with albinism and several of them had issues with people staring. Thankfully, I'm too blind to see people staring at me, but I'm sure a good majority of them do.

and ARE you pretty fly?

Not really. I keep to myself and stay indoors doing research and writing. But while the "fly" kids are out at the mall or the movies or partying it up—I'm informing the public on albinism, writing for a magazine, and traveling the world. I like my non-flyness better :P

Thanks for doing this AMA! I've really wanted to know for a while now how people with albinism get on in life. You seem like a good person. I'll ask you something simple. What's your favourite colour?

Anything I can do to increase awareness, and thank you :) My favorite color is blue.

I like the colour blue too! Question 2, What is your opinion on this sea creature?

It looks... strange. I want one. I have pet goldfish :)

that creature can hit with the force a bullet

Where can I get one?

Actually, that's probably not a good idea. I'm blind, so I wouldn't be able to see it coming my way.

That, my friend, is a pistol shrimp. If you ever do get one, make sure it's the only thing in the tank, because it will kill literally anything else.

What do they eat?

Is there anybody else in your family with albinism?

Not any of my siblings, no. My great grandfather had it, and a cousin in Mexico does, but that's it.

If you decide to have a child/children, what is the likelihood of passing it on? Are you worried about it? How comfortable/uncomfortable are you with possibly having kids who have albinism?

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

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

I've thought about that for a very long time. And although it may be equivalent to picking the wedding cake on the first date, I've dated girls with albinism and we've discussed this. On one hand, you wouldn't want someone to have this condition and deal with all the BS we've had to deal with growing up. On the other hand, it would be incredibly easy for us to relate to our kids and understand it—which is not the type of understanding most people with albinism can have with their parents. For now, I don't know. I guess I'll cross that bridge when I get to it. Excellent question!

How rare is albinism? Have you ever encountered anybody else (outside of a medical setting) that also had albinism?

The global occurrence is one in every 20,000 people. Yes. Last year I went to a conference hosted by the National Organization for Albinism and Hypopigmentation. It had over 800 attendees from 44 states and 9 countries.

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He was a polar bear :P I'm turning 19 next week and still have no chest hair. I also grow very very little facial hair. It's enough to shave (with subsequent razor burn), but not enough to really notice without getting close. My arms are hairy, though. I don't think there has been a study on albinism and hair growth, but I will ask the experts and let you know.

I don't really have a question, i just wanted to say that on my phone flickr loads like this and i was reeeally confused for a second

http://i.imgur.com/r5LSO7g.jpg

HAHAHAHAHA!!!!!!!! Yeah, I'd be horrified, too!

Thanks for doing this!

I can't tell in the picture, are your eyes pink? How easily do you sunburn? How's your vision?

Our eyes actually aren't pink or even red. Most people with albinism have blue eyes. Mine are blue and green with a yellow center, because I have pigment in my iris.

I don't sunburn easily because i stay inside :P However, I can tolerate about an hour or two in the sun without sunscreen. After that, the horrid sunburn sets in.

My vision is 20/400 without correction. And around 20/150 with correction. So, I'm legally blind.

Can we get a close up of these yellow eyes?

Here you go. Taken at the National Eye Institute:

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

beautiful eyes

Thank you :)

Do you have eyelashes/or are they just really pale and not showing up in this picture?

I have eyelashes. The photographer moved them out of the way for that picture. That slight hint of light blue is her gloved finger holding my eyelid up.

Also, you can stay an hour in the sun?! I'm of mostly Irish descent, so very pale, though I am not a person with albinism. I can't be in the sun for more than 20 minutes without sunscreen !!

Different people have different definitions for a sunburn. I define a sunburn as one that freaking hurts, and that takes about for hours in the sun for me. I'm sure I get red (I don't check), and some define that as a sunburn. I had to do one hour of physical education daily in high school, and I walk around town for about an hour on weekends. I only get one or two really bad sunburns a year (on vacation).

It's important to remember that you can't be too cautious and avoid the sun because then you won't activate vitamin D. It's thought that many people with albinism have a vitamin D deficiency.

What is your correction? I have bad vision, but I don't know any numbers other than my correction. Just curious as to how our vision compares.

It varies, weirdly.

My ophthalmologist said the best he could get me up to was 20/200 My orthopist got me up to 20/160 with strain Testing at the National Eye Institute got me up to 20/100.

When I asked my orthopist, she said that it "depends on the room, testing equipment, and the day." I think that's utter BS. So, I just say my vision is 20/200 corrected, but I'm going to see my ophthalmologist soon and see if he can get me up to 20/100 like they did at the National Eye Institute.

Hmm. That's strange that it varies. I've never been given a 20/some number. I just know that my contacts are -4.50 and -4.25. I'm legally blind without them, but fine with them on.

My prescribed glasses that get me up to 20/100 are -6.00 and 2.50. Most basic eye problems like astigmatism can be fixed with surgery. My mother recently had surgery to correct astigmatism and a slight cataracts. Meanwhile, I'm stuck where I am.

If this is the case, do you know where the stereotype of albinism causing red eyes comes from? Is it just assumed because albinism in rats causes that?

Most people with albinism suffer from iris transillumination—meaning that our eyes light up bright red when exposed to light because there's no pigment to block it (It would be completely dark for normal people). I'm also assuming that plenty of pictures of people with albinism result in them having red eyes (like everyone else). I also hear that animals with albinism have red eyes (like the lovely gentleman down there with the mean rabbit).

Is albinism genetic

Yes, autosomal recessive.

What side effects do you suffer from the condition other than sensitivity to sunlight?

1. A lack of pigmentation (Not complete in my case, I have some, but very little).
2. Legal blindness due to a combination of factors including nystagmus, lack of pigmentation in the retina, missing fovea, and misrouting of the optic nerves.

That's pretty much all it sums up to. Albinism is just vision and skin. The cause, specific issues, and variation are complex. But on the "symptom" side, if you will, it's just lack of pigmentation in the skin and a severe visual impairment.

Oh Jesus, sounds horrible but I wonder what you'd look like if you got bored and experimented with spray tanning. Oh Jesus, do it for Halloween.

I'd probably look like Snooki.

Nothing to ask you here, but great to see you're answering all the questions, thankyou for that :) I went to school with 2 brothers who had albinism, but I didn't know them well. They seemed to fit in, but kept to themselves.

Glad I could answer all the questions and improve awareness. I'm sure all those that have seen me and stared had questions, but just didn't bother to ask.

Do you wear super thick glasses?

At the moment, no. Glasses have never ever done anything for me other than make my vision just a bit sharper. However, I am going to get super thick glasses for reading. They're waiting at my ophthalmologist's office.

'Sup, Greetings from Sonora, so... does your extended family in México calls you "güero" or something along that line? I have read that a cousin of yours has albinism too, but you sure know how us, mexicans, like to call people nicknames and all that. Also, thanks for this AMA, it is pretty neat.

Sometimes—my grandmother does. That's actually my cousin's name (well, what we say when we refer to her).

Is your skin more sensitive to to various products/chemicals because of the albinism? Things such as skin care products, lotions, etc.

Not that I know of. I use alcohol, aloe vera, hydrocortisone, and so on and I've been fine.

Google just returned about 1,100,000 results for "Albino Porn".

Your thoughts?

See Rule 34.

An albino knows the rules of the internet. /thread

When I was in high school, people asked me what I was going to be. I said, "I'm going to be an actor in the porn industry. Albino porn is very valuable to some people."

I always thought if any person could get away with the porn name 'Moby Dick' it would be someone with albinism.

How about (White) Chocolate Thunder?

Two questions to you sir, For one, why would dating be difficult for you?! You're obviously an attractive guy studying something awesome.

And, why is the term "Albino" offensive? I like an asshole now for never knowing that it was a negative term!

“Having a love life, for me it’s hard. Really hard and harsh. I like girls and they say, ‘I don’t like you, I just like you as a friend.’ Maybe they just think I’m not cute enough—which I am, but they just don’t see it. They’d rather see someone who’s big, gigantic, strong, and plays football instead of this kid with albinism and takes taekwondo. It’s really heartbreaking.” —Kenyen Flowers

I don't now specifically why it's offensive, but the albinism community doesn't like it—at least in the United States. Albinism InSight says, "NOAH generally uses the term 'person with albinism.' However, authors may use or refer to themselves as albino." You shouldn't feel bad. Most people don't know, and it depends on the person. I don't particularly like albino, but I'm not going to rip someone's head off for using it.

what is one thing you wished everyone knew about albinism?

We don't have red eyes!! Um... I wish everyone knew about the visual impairment. It's so irritating when someone screams my name from across the room or across the quad. I can't see who's screaming, so I just kinda brush it off so I don't wave at random people and look like an idiot if the person who called me isn't there. And then said person thinks I'm ignoring them and I have to explain I can't see them and... ugh!!

what spf do you use?

The sunscreen that I have on hand is SPF 50. I've been told anything above SPF 30 is "just marketing" and not any more effective.

Do you think it would be easier living somewhere like northwestern europe where you would look more similar to others?

I've never thought about that, but it would probably be easier. I heard Sweden has lots of people with fair skin and blonde hair (and that some people with albinism will get asked if they're from Sweden). For now, I fit in at national conferences and events for people with albinism. This October, I'm flying to Sydney, Australia for a conference for people with albinism.

I once was in Mexico and saw an albino dude in a speedo. He was also extremely overweight.

You aren't overweight, but speedos aren't that cool, so please never wear one?

I remember when I was taking P.E. in high school, and we were doing swimming—the teacher specifically stated that we could not wear speedos.

Me: What's a speedo? Classmates: Oh, speedos are awesome!! You'll be totally cool if you wear one!

Yeah, not happening.

Hey, I know of you through my girlfriend who also has albinism!

What is the most ridiculous story you have involving your albinism somehow (brought up in an exchange, key point in a conversation, etc)?

When I was trying to get a lab order form so I could get tested for HPS, the doctor refused to issue one because he didn't believe I had albinism. I have OCA 1, so it's white skin, hair, everything. But no, he wanted to see paperwork that said I have albinism: I wasn't able to convince him, and I walked out without the form. When I went back to my regular doctor (who's super awesome and is actually actively researching albinism) I told him the story. He stared at me and asked "What planet is he from?" Notwithstanding, from that day forward I take my entire medical history to every doctor's appointment—including five letters from five different doctors confirming OCA. Never again will a doctor be able to doubt me like that.

Do you have a white dick? Serious question

Yes. Serious answer.

You have gorgeous coloring, that hair is amazing!

Thank you :) Some doctors have noted that it's more blonde than the snow white you see with most people with albinism.

Are you wearing coloured contact lenses? And if not, have you considered getting extremely bright blue contacts just for the hell of it?

I don't wear colored contact lenses. Our eyes aren't red, as most people believe they are. Most people with albinism have blue eyes. Mine are a blue/green mix with a yellow halo thanks to pigment in my iris. I have considered getting colored contacts, but I don't like the idea of jabbing things into my eyes—especially since my eyesight is so poor already.

Do you feel like would rather not be albino if given a choice? Or do you feel at this point it has come to define a huge part of you as a person? By the way i think its awesome. Being unique is something way too undervalued in our society.

This is something I've debated for a long time. And, when I was a child, I distinctly remember riding the bus home and just thinking, "Why me? Why me? What would it be like to be normal? Even just for a day?" However, if there was a "cure" for albinism (which there might be, eventually. Nitisinone looks promising), I wouldn't do it. Albinism makes me unique, and although there are lots of struggles and it can be a big pain—you learn a lot. And it's much more fun than being normal. Besides, pigment is overrated!

Hey, man. Thanks for doing the AMA. I actually also have albinism but only ocular. So, like yours, my vision is terrible. Other than my family, I've never had the opportunity to meet anyone who shares the disability. I understandably only deal with people who just have no idea. I'm pretty comfortable with myself but I never tell anyone unless they just straight out ask, and I think I subconsciously try and hide it from people I don't know very well. This gets me into some complicated situations.

Like this week, my roommate (who I haven't known for very long) asked me to substitute on his softball team. I guess it was my attempt at not seeming weak, but I excitedly said "Sure!" knowing full well that I wouldn't be able to see the ball. When they were a handing out positions, I prayed to the softball deity that they would give me catcher or something. They stuck me on second base. I cried a little in my heart. But then I was like "Maybe they'll never ever hit it to me!" Nope. It came to (and rolled right by) me over and over.

My team kept saying "Good job, grizzanddotcom." but I knew. I knew.

So, I guess what I'm saying is it's nice to know I'm not the only one.

P.S. You should pursue really pale, red-headed girls. They're really nice. Until they break your heart into a million pieces..

Aww! That was such a heart-wrenching story! Yes, when you meet someone else with albinism (even if it's just OA) the connection is so amazing, it's unlike any you'll ever experience otherwise and I love it. I just prefer to shout, "but I'm blind!" as my excuse for situations like that. That's one thing I wish everyone knew about albinism—the severe visual impairment that comes along with it.

Keep it up, inform others, and just try to live life. You're lucky in the fact that you don't have OCA.

Hahaha!! I'll keep that in mind :P

Do you have moles or other dark spot on your skin on your skin like everybody else? BTW most albino girls are super hot.

Yes. It gets scary because melanoma moles may not be pigmented, so you have to be extra vigilant. Oh they definitely are :)

This might sound stupid, but you should consider moving to northern europe, less sun, more dark time during the winter and autumn. Just seems that your kryptonite is the sun, they have less of it.

Actually, Alaska would be best. 30 days of night, AND I can blend in with the snow! Yes the sun exposure can burn me in a nanosecond and the whole sunscreen thing gets old but the condition isn't bad enough to warrant moving to a different continent. I did consider moving to Seattle, though—due to the constant overcast.

That's awesome that you're comfortable enough to post an Ama. Kids can be mean, especially during middle school. Things will get easier as you grow up. After looking at your pictures albino didn't jump out at me. I guess some people are less noticeable than others. I didn't go through all the comments so sorry if it's been already asked, are you the only one who has this in your family? Can you pass this onto your kids? Besides eyesight, any other health problems you face?

I also write for a magazine. Anything for public awareness, and I adore all the questions.

Yes, of my immediate family. My great grandfather had albinism, and I have a cousin who has it, but I last saw her around 8 years ago.

Yes, it's genetic so it can be passed on. The odds are: ●Two people who do not have albinism but are carriers: 25% chance ●One person who has albinism and one person who does not: 50% chance if the person who doesn't have albinism is a carrier 0% chance if the person who doesn't have albinism is not a carrier. ●Both people have albinism: 100% chance if both people have the SAME TYPE of albinism 0% chance if both people have DIFFERENT types of albinism [If they have different types of albinism, the children will be carriers for BOTH types]

I, personally, have been facing these awful gastrointestinal problems, but they're not caused by albinism directly.

You've said dating is a very hard thing for you. I personally can't see why. Is it because you are unable to drive or is it something else?

Also, have you copped much teasing for your condition throughout your life? What precautions do you take when you go outside in regards to sun safety and any other needs you may have?

That's best answered with a quote: “Having a love life, for me it’s hard. Really hard and harsh. I like girls and they say, ‘I don’t like you, I just like you as a friend.’ Maybe they just think I’m not cute enough—which I am, but they just don’t see it. They’d rather see someone who’s big, gigantic, strong, and plays football instead of this kid with albinism and takes taekwondo. It’s really heartbreaking.” —Kenyen Flowers

I wasn't actually teased much growing up. I live in a small town and I grew up with my classmates, so they were very used to my when it came to the awful years of middle and high school where most people with albinism are teased the most. I usually just go outside. I SHOULD be wearing sunscreen and sunglasses, but I never do. I'm one of those rebellious people with albinism :P I do take my monocular everywhere, though.

I thought albinos had red eyes.

No, we don't. Most people with albinism have light blue eyes. Mine are a mix of blue and green with a yellow ring.

Do you have nystagmus as well?

Yes. It's gotten better as I've gotten older but.. I still have it.

Do you find the idea of calling a beer "Albino Rhino" offensive?

http://www.theglobeandmail.com/life/the-hot-button/the-albino-rhino-is-no-more-earls-rebrands-beer-after-human-rights-complaint/article8834872/

I've read all about this on AI and various boards. Generally, "albino" is considered an offensive term to us. We prefer "person with albinism." However, "albino" is generally accepted in the UK and Australia. To get back at everyone, we call people who don't have albinism "pigmento."

I was against the beer name because it adds a further public negative view on us and the condition. First evil albinos in movies, and now this! :O

Are there many positives you like from your condition? Also do you like the attention you get?

The only pros I can think of is that I'm very very unique, and there are many jokes that can be made. Also, meeting someone else with albinism is an incredible, indescribable connection. This kind of attention is nice. I get to inform lots of people. I didn't expect that my thread would get so many questions and so much attention, but I'm very glad it did and I'm staying up late to get to all the questions. The stares, rude comments, etc. I could do without, but I'm used to it. What I love is when people make comments about my skin or hair or vision in Spanish because they think I won't understand them. I'm Mexican American and a fluent Spanish speaker.

Thanks for answering. I'd love to see their faces when you respond to them in Spanish

I've considered doing that and I think I will one day.

Oh please do. It would be hilarious (and embarrassing for them)

They don't like make fun of me or anything, they just discuss amongst themselves how my hair is so white and so on. I think I'll respond with an albinism fact :P

What's your favourite TV show?

That's a tough one, but I have to say The Amazing Race, or Untold Stories of the ER. What's yours?

You ever listen to king yellowman?

Never. Are they good?

Ever considered dying your hair brown or wearing colored contacts??

I don't need colored contacts because my eyes already have color. I wanted to dye my hair for a while, and strongly considered it during my senior year. I've heard that, because of the lack of pigment, color doesn't stay in our hair very long. I went to a local place a few weeks ago and they said they couldn't dye my hair. For now, I'll just keep it the way it is.

You are beautiful (physically), don't change a thing. However, I do hope your vision improves!

Thank you :) Self-esteem is one of the biggest things we struggle with, and I did a lot when I was kid. But as I got older, I became more okay with myself. Everyone responds differently. Some just stay the way they are. Others will spray tan and dye their hair and do every single thing they can to look normal.

Do you get picked on much?

Not really. I've heard lots of horror stories of bullying—including someone who was beaten up JUST for having albinism. I live in a small town and I grew up with my classmates, so they were pretty used to me. Still, I'll get the occasional rude comment. Just the other day, I was walking down the street when someone screamed, "Hey! Why are you so white?"

I see you mention multiple times that having albinism negatively effects the dating aspect of your life, but it also seems that you don't have a lot of trouble getting along with people and a lot of people here on reddit (including myself) think you're cute! If it's not too personal, how exactly does your condition make dating an issue?

Oh yes, I'm rather confident. I have no problem walking up to someone I've never met before and saying hi and starting a conversation. It seems most people with albinism are very shy and reserved and would never do such a thing.

As for dating, the best answer comes in the form of a quote: “Having a love life, for me it’s hard. Really hard and harsh. I like girls and they say, ‘I don’t like you, I just like you as a friend.’ Maybe they just think I’m not cute enough—which I am, but they just don’t see it. They’d rather see someone who’s big, gigantic, strong, and plays football instead of this kid with albinism and takes taekwondo. It’s really heartbreaking.” —Kenyen Flowers

That's quite sad to me partially because I hate big football dudes and I take/love taekwondo but I don't really know what else there is to say, I'd like to think that someday everyone will find someone that can appreciate them and love them for who they are. I wish you luck!

It'll likely happen someday, and everyone here says it gets easier with age. It's just really tough during middle and high school when all the popular guys who are athletes or just popular in general get all the dates and... well... then there's me. my personality is rather desirable from what I can gauge so it's definitely the albinism.

Have you ever thought abut dying your hair? Colored contacts?

I thought about dying my hair for a while, and strongly considered it during my senior year. However, I've heard that our hair doesn't retain dye well because of the lack of pigment. I went to a local place a few weeks ago and they said they can't dye my hair. For now, I'm keeping it how it is. I don't need colored contacts because my eyes already have color, but they do sound interesting.

I am wondering about your eyesight. Do you have any problems with vision or eyestrain, etc? I've always wondered whether albino eyes don't see as well because the retinas aren't black; i.e., do apigmented retinas not absorb light as well as black retinas?

I'm legally blind, most people with albinism have a severe visual impairment. The eye problems are caused by a variety of things including nystagmus, foveal hypoplasia, a missing fovea, misrouting of the optic nerves, an iris transillumination. So, yes, it is because the retinas aren't dark. But it's also other things.

ever seen me myself and irene casper?

Never. I've been called casper a few times, though.

I have always thought albinos to have a beauty unlike a non-albino. Is that a sentiment shared by many people you encounter?

It depends. Most people with albinism have very low self-esteems and don't really see themselves as beautiful. I've always adored albinism and how beautiful it is (and if you don't feel beautiful, Rick Guidotti will prove to you that you are).

A pre- question note: nothing in my question is intended to be offensive, I'm just curious!

Awhile back (a year ago?) a restaurant chain in my city had a huge conflict with the albino community because of a new feature menu item that the restaurant called the "Albino Rhino". I was wondering if that sort of use of the term 'albino' is something you disagree with or find offensive also.

I was deaf awhile back (temporarily for about two years due to degenerative joint disease) and I think that if they made like, headphones that used the term 'deaf' to promote their noise cancelling feature I would just laugh, but maybe that's me. Just wondering how others feel about this type of , uh, physiological branding? Or whatever you want to call it.

Thanks for your answers : )

I read all about that on Albinism InSight and several boards. "Albino," generally, is seen as an offensive term. However, it is very well accepted in the UK and Australia. We prefer "person with albinism." I think the backlash was because there's already such a negative public mindset on albinism with all the "evil albinos" on films, and now the word is being used for a restaurant menu item.

Creepy as fuck.

I am Boo Radley from To Kill a Mockingbird.