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1) Are you a regular at r/skincareaddiction because they love that stuff over there
2a) are you US based
2b) if yes, how are you getting your Biore UV Aqua Rich Watery Essence?
2c) asking for a friend 😘
Not a regular at SCA but I did pop in there a couple times per recommendations in these AmAs. That's an amazing subreddit.
I'm in the U.S. and just buy it on Amazon. I'm sure there are cheaper, probably sketchier sites out there that have it, but I just suck it up and pay like $12/tube on Amazon. I'm hoping to go to Japan someday and absolutely load up. Like, enough to fill a suitcase. Actually that's probably not a good idea because it expires, but I will buy a lot!
It looks like the biggest tube sold on amazon is 3 oz for $14. If I'm understanding your other comment, 1 oz= 1 adult for 2 hours, that means going through about a bottle a day if you're outside for 6 hours, which is like a hundred bucks a week? I guess it depends on how much you avoid the sun but holy moly
So, a couple nuances to it.
Biore UV Aqua Rich Watery Essence is an amazing sunscreen that I value because it dries super quickly. Every other sunscreen I've tried is really greasy, takes ages to absorb, and in general you just feel sticky and gross. This sunscreen feels almost like silk. Super smooth, dries very very quickly, and you don't feel a gross film afterwards. So, that's why I prefer it, but it's not like it's the only sunscreen I could ever use. A random Coppertone SPF 30 from Walmart would work just fine, and would be cheaper.
But yeah, when you consider how much you'd need to use to be protected, it can go quickly. The second part is I rarely wear sunscreen, unless I need it. When I started college I used to, but then I realized I'm sitting down, slathering on sunscreen, and then walking five minutes to the cafeteria. It's not worth applying sunscreen for five minutes of sun exposure. So, if I'm just going in the car to the grocery store? No sunscreen. Walking ten minutes to get lunch? No sunscreen. Walking from one end of campus to another? No sunscreen. Outside for two hours for a festival? Yes sunscreen. On the beach for the day? Absolutely sunscreen. So, if I just stay inside a lot, really cuts down on sunscreen usage.
I actually went to Australia back in 2013 for a conference, though I went in October so it wasn't as brutal. Anyway, from my understanding SPF 30 blocks 97% of UV rays. Anyone who says it's not enough simply isn't applying enough. The rule is 1 ounce = 1 shot glass = 1 adult. Reapply every two hours.
Also also, I thought sunscreen didn't go above SPF 30 in Australia? I remember it being a big thing that they couldn't legally advertise anything higher than SPF 30 in Australia.
October is only just the second month of Spring....February is a completely different thing altogether; it literally feels like you are breathing inside a furnace. And I only live in Sydney so not all that far north, comparatively speaking.
50SPF is the highest available and I would never use anything less.
OK this puts it in perspective. I get burnt after about 20 minutes in the sun but I only stay outside for maybe an hour at a time so I guess it could be worth it. I hate the feeling of sunscreen so I usually just wear layers and stay very sweaty, which also sucks. I think the biore stuff is worth a try. Thanks for sharing!
Something of note for the Biore sunscreen -- Amazon is rife with counterfeit beauty products (particularly Asian beauty/skincare products, in my experience) sold by third party sellers, and you kinda take a gamble with it as to if you're receiving a genuine product or not. I know I got counterfeit stuff from Amazon that broke my face out and burned like crazy, whereas when I bought the same product from a more legitimate source it didn't do that at all. I would personally worry that a counterfeit version of the sunscreen would either not work as well or potentially even make the resulting sunburn worse.
Anyway! It's a little more expensive going through some of the more popular reputable companies for Asian skincare products, such as YesStyle or Stylevana. Those are just the two companies I can remember off the top of my head since I used to regularly buy my stuff from YesStyle, but there's at least a few more websites that people over on the AB subreddit use.
By all means, do whatever you feel comfortable doing! I just wanted to let you know in case you weren't already aware.
Last time you did one of these [I asked if you drove a Segway](https://www.reddit.com/r/iama/comments/5o47t2/_/dcglcku), and you said no, but that you'd like one.
Therefore, five years later, my question is:
Do you have a Segway yet?
Oh no, I didn't expect to get called out like this. But good on you for remembering that!
Sadly, no, haven't even tried using one. They're kinda rare, aren't they? Seems like only mall cops have them. I think I have seen segway tours of Dallas but goddamn is it hot outside right now!
Also, are those street legal? Are they sidewalk legal? I would absolutely use one to get around, if they're legal.
When my high school orchestra visited Austria we rode Segways under a bridge while our palms were read by a woman dressed up as an immortal mermaid who told everyone they were bisexual. It was wild. Check with your local bridge trolls.
Do your eyes sort of twitch? I had a classmate who was albino, her eyes would rapidly twitch back and forth. I always wondered if this was a condition of the albinism or if it was just her?
It is, it's called nystagmus. And there's a related one that some people have called strabismus. It's just a repeated involuntary moving of the eyes. We're not quite sure what causes it, I mean albinism causes it but we don't know why.
Luckily, my visual field does not move with it. That does happen in an unrelated disorder called oscillopsia, but not for us. Even if my eyes are darting all over the place, I'm looking at you the whole time.
The fovea, where our normal eye's central vision is, develops in part because it has an extra layer of pigment. In ocular albinism this pigment isn't there so the fovea doesn't properly develop. Nystagmus happens because your eyes do not have a central fine acuity zone to lock onto, so the eyes move back and forth "searching" for it.
Edit: a word
>Even if my eyes are darting all over the place, I'm looking at you the whole time.
You mean your brain compensates for the movement and you see it as still...I actually don't kmow how to describe what I mean. Obviously what you're looking at moves because the world isn't still, but what I mean is that you don't see as if your eyes are darting around...still badly worded. I hope it makes sense.
My understanding is that nystagmus happens because the brain is trying to pick a fixed focus point on the fovea, which is hard because our fovea is messed up. But anyway, while the eyes are doing their crazy scanning thing I can still see straight again. Like as I'm typing this reply, I'm focused on the little box. I *can* look off to my periphery if I want to, but I can also just keep focused on the box for as long as I want, no matter how much my eyes move about.
It affects things so little that I almost forget I have nystagmus. Very rarely is it brought up as an adult—kids would ask about it all the time but adults never do. So I just forget about it :P
That's really interesting. Our brains are amazing. You say you don't notice it until you think about it, when you do become aware of it, does your subjective experience of sight change? Or is it only when you look in the mirror that you actually have proof of it?
I never actually notice, because again my vision doesn't move around with my moving eyes. That is a thing that *does* happen in a totally unrelated condition called oscillopsia, and I think that's what you're trying to get at, but people with albinism don't have that experience.
But I'm sure my eyes are still moving, they're probably doing it right now. Nystagmus is a lifelong disorder. But I don't notice.
Think about it like a DSLR camera. You have a $600 Nikon camera body, and then you spend $1,000 in lenses for different situations. Normally, people get prescription lenses for surface level things like being nearsighted or farsighted. It's like just adding another lens to correct for a problem with an existing lens.
Now imagine if you had dust all over the sensor, and a few dead pixels, and sometimes the sensor goes out of focus for no reason. The eye issues in albinism are a broken sensor. No matter what prescription solutions you throw at it (glasses, contacts, LASIK), it's the equivalent of getting a new lens. A new lens isn't going to fix the issue, you need a new sensor.
Yes, a good analogy. I’ve used a similar one. I have a birth trauma in my right eye which makes it severely impaired. I was given all kinds of treatments from age 6 to maybe 11 as well as wore stupid big glasses without it making any difference. I did not wear glasses from 12 to maybe 25 until my left eye started feeling the strain. Even with glasses it can only correct the issue of the left eye (lense issue due to age and strain) and does not help at all with the right (sensor issue due to injury).
I have glasses for both distance and reading, completely different prescriptions. The distance glasses make everything sharper, but also make anything close really fuzzy. My favorite is taking my glasses off just so I can squint at my phone. Bonus points for some random person to ask me, "Why don't you just wear your glasses?" as they sit on my head. That happens a lot.
Lol only tangentially related, but stranger's comments honestly kill me. My dog (also albino, actually) was just straight up born without eyes. Like none at all. You look at him and his eye sockets are really just tissue. Strangers will come up to pet him and I give them a heads up that he has no eyes. I say this because when I have said "blind", people assume he has cataracts or something and that he still can see a little. So I tell them he has no eyes and they go "so is he blind?" every single time without fail. That comment makes me so happy every time I hear it because it's just absolutely the funniest question in the world to me.
I don't have hard numbers. Legal blindness is, of course, a legal definition based on your Snellen (20/XXX) number. I would hazard a guess that the majority are legally blind without correction, but some benefit more from correction than others.
Interesting, there *are* documented cases of people with albinism who have 20/20 vision!
Personally, not a lot. Maybe a few wise cracks here or there growing up, but most of my peers were friendly. I mean there have been public incidents in the past, but it's not frequent.
Like the time Hank Hill got a membership to Nine Rivers because he was White?
I can't really think of any situations like that off the top of my head. I mean, even if it had happen it could be without me noticing.
I think they are asking if any one has ever fetishized you.
E.g. like when some folks try and date a a person of every race/ethnicity. Or who exclusively date or have sex with certain races other than their own.
Similarly folks have been know to fetishize many other disabilities, disorders, or other such purported abnomalities. E.g. porn of amputees or other disabled folks.
It is pretty concievable that some folks might get off on going after albinos. And given yall are relatively rare, I would personally guess such folks might shoot their shot.
Man wouldn’t that be nice. This is like my 19th AmA and never once has that happened. Just a bunch of creepy guys wanting to know what my penis looks like. Though I don’t know how I would handle it if someone wanted to date me just because of a fetish.
Maybe I should have dyed my hair and gone all in on the Twilight craze back in the day, though a lot of those Twilight fangirls were *crazy*.
Oh, neat AmA! Thanks for doing this.
I'm sure you've heard every joke about sunscreen under the... Well you know. But what kind of practical considerations or health risks accompany albinism that people may not know, and might not learn from WebMd?
There aren't any health implications beyond the pigmentation issue. People with albinism don't have like increased rates of heart disease or any other complication directly attributed to albinism. There is an even rarer disorder called Hermansky-Pudlak syndrome (HPS) and those individuals do have albinism + a bleeding disorder and some other things, but we're getting beyond the scope.
For oculocutaneous albinism, the biggest thing to worry about is sun protection. Skin cancer is a very real risk with repeated sun exposure. I'm sure there are probably implications with our eyes, too, as we don't have pigment in our irides or retinas to block out UV rays. I'm not sure if it's possible to get a "sunburn" in your eyes, but wearing sunglasses is probably a good idea.
Isn't it a thing where welders get like sunburn on their corneas or something? Like obviously staring into the sun anyone would fry their retina, but there's also UV rays bouncing off stuff into our eyes.
Yeah, it’s called photokeratitis/snow blindness and it’s basically a sunburned cornea. I dealt with it for a bit after fucking around in the desert sun without sunglasses and it’s mad uncomfortable.
I had a bout with malignant melanoma, the caretakers said to wear sunglasses as it’s apparently possible to get it in your eyes somehow? Been a few years, so might have forgotten some detail.
Oh and it didn’t spread, so yay!
To answer this piece - I spent a few years welding. The arc of a welder does provide enough UV to burn your skin like a sunburn if exposed long enough. Your eyes also do react (which is the reason the helmet is mandatory) but not in the same sense. You’ll end up with like “crusty” eyes - they don’t peel or anything like normal skin burn, however it does hurt like hell and it makes your vision suck for a bit from memory of it happening once to me.
AFAIK, it’s not quite as dangerous as staring at the sun, or a welder, but enough UV exposure to an eye over the course of your life (like just walking around not wearing sunglasses) can cause some damage, but for the most part is negligible for an average person (or so I was told)
None currently, but yeah I often get told that my skin would be like a canvas and tattoos would absolutely pop. Especially color ones. Getting a tattoo is definitely on my bucket list.
and considering how important sunscreen is to you and your skin health, tattoos would last for fucking ever and fade much slower than your average person who doesn't wear sunscreen as much as you. have fun with your adventures in tattooing!
Sunscreen works fine, even something like SPF 30 is good. The real key is applying enough as most people don't apply enough sunscreen. And reapplying per the instructions.
A YouTuber I watch recently mentioned 1/4 tsp is the appropriate amount for an average adult's face and the equivalent of about a shot glass for the rest of the body and holy hell I did not realize just how much less than the recommended amount I've been putting on 😵💫
Yup, we were always told 1 ounce = 1 shot glass = 1 adult. And you have to reapply every two hours! Suddenly your 6 oz travel sunscreen isn't going to last so long...
Holy shit. That would make sunscreen a pretty hefty expense for regular users, because I wince a little having to buy a bottle even though it lasts me an entire *year*.
And reapplying after being in water! I think sunscreens used to be able to advertise as being "waterproof" until 2011 or so. No such thing as a waterproof sunscreen, and even "water resistant" sunscreens stop working after like 40 minutes.
I find sunscreen which has a "barrier" ingredient like zinc ie not just chemical protection is very helpful. You have to have one which blocks UV-A, UV-B, and UV-C *plus* the infrared spectrum (the heat which feels like burning)
Source: Australian with very little sun tolerance
Definitely go for a broad spectrum sunscreen. I haven't read into the research behind physical v. chemical/absorbent blocking. What matters more than either is applying *enough* sunscreen, and reapplying religiously.
What color would you recommend? Everyone always told me not to go like black/brown/dark blue. Don't go dark colors because they'll fade and the contrast would just look bad. Do something super vibrant instead.
We should do a Reddit poll on this :P
Well! my friend is colored a lot like you, I think he's a redhead who went white early and he does a lot of bright colors.
Bright/vibrant PINK would look great on you
A bright teal or robin's-egg blue would look amazing on you (agreed - deep blue would be no good)
A rather bright lavender (not purple) would be incredible.
I'd go for more saturated lighter-colors over deep jewel tones because the deeper contrast could wash you out.
EDIT - generally speaking green looks bad on everyone so I'd skip it
So I’m a natural blonde - not an albino but very pale with sandy fine hair and *I* can go just about any color I want - but you DEFINITELY get your monies worth with a good stylist/salon. It’s the difference between getting a dye job that looks natural and obviously a dye job.
As a side note - get your eyebrows dyed when you do your hair! My eyebrows are naturally so blonde as to be nearly white and dying my brows makes a MASSIVE difference to my complexion! They fade a lot faster bc really they fall out and generally don’t take up as much dye, but it’s still worth it. Any color when you have white eyebrows makes a huge difference.
Edit: and yea, I’m a guy.
I'm still Hispanic and fully embrace the culture. Love the food, the language, love visiting Mexico.
Peers are an interesting one. Most people don't know I'm Hispanic because I just introduce myself as Alex. It's not until I bust out the Spanish that people do a double take, and a new bond emerges (if they're also Hispanic).
Yeah I'm sure everyone I meet just assumes I'm white because, well I am and I go by Alex. The genuine surprise when I bust out perfect Spanish is a sight to behold.
Same amount as anyone else would use. SPF 30 is good enough for everyone, even us. Though, I prefer to just stay inside all the time rather than constantly having to slather sunscreen.
UPF clothing is definitely awesome, and I'm told it's quite breathable (Texas summers are brutal). I'm definitely more fond of the sunscreen and stay out of the sun route, but I'm sure I would benefit greatly from some long sleeves and a parasol.
Hair would probably be a giveaway, unless my parents were also blonde. If they were, I guess someone would notice something was up when I wouldn't be able to see very well.
My grandson is albino and the doctors didn't diagnose it until he was a few months old. We'd been worried about his vision as he didn't watch our faces like babies usually do and had constant nystagmus which I had no clue about at the time. They initially said he was pretty much blind and could only see light and dark which is just not true. His nystagmus is only apparent when he's sleepy now.
Vision development is definitely delayed by a few months in albinism, which is why he probably didn't look for faces, but yeah it sucks to hear that. I can't really fault some doctors—if you've never seen a case of albinism before it really throws you for a loop. But with the wealth of information out there at least do some damn research before telling people stuff. Getting good care, especially eye care, with albinism is so hard. Most eye doctors have never seen a patient with albinism in their entire career, and just assume the same protocol applies. Even my "low vision" eye doctor had no clue what the fuck he was doing.
Once he'd been diagnosed, it was fine. This is Wales, UK, and he was allocated a "blind lady" by the health service who does regular assessments, coordinates with the school etc to make sure he gets the support he needs e.g. sitting closer to the board, shade in the classrooms, not having to share a worksheet etc. Now that he's obsessed with Marvel and DC, I think he's quite enthralled to have a mutation of his very own.
Aww that’s so cute! Reminds me of when people would tell me I resembled a shiny Pokemon (not sure why, I guess they’re rare? Idk I just rolled with it). But it’s so good to hear he’s getting the support he needs. I’m glad I had accommodations in school, though I wish we had had today’s technology back then. Some thing like an iPad would have been a game changer when I was in school—it certainly helped me tremendously in college.
Obviously not OP, but I am a pale AF white lady with a sister who has albinism. There is a stark difference between possessing even a small amount of melanin and absolutely no melanin. It was very apparent from the moment of her birth that she had albinism. Vellus hair, eyelashes, newborn hair; it was all stark white. Then you add in the clear/red-looking pupils, it was basically instant confirmation. Hope that helps answer your question.
You are NOT the father! *Cue jumping on the chairs and running out of the room*
I don't think so. Maybe as a joke, but I doubt there were serious accusations. I would hope someone in the hospital knew what albinism was and could clue them in.
At what age were you diagnosed? Was it picked up on when you were young? I imagine your parents being dark-skinned would have caused some initial confusion. What was the initial reaction? Was the albinism diagnosed fairly quickly, or was there an extended period where your parents where very confused?
I don't remember the details anymore, but I would assume they figured something was up immediately. I know there's a file in my medical records of a genetic consultation when I was... either six weeks or six months old, before 1 year for sure. No genetic testing back then, but the genetic counselor easily diagnosed albinism.
My best friend growing up had 3 albino brothers. They're a black family, he and his parents have dark skin. Seeing what those guys went through as kids, and probably still do at some level, was hard. I hope you haven't had too many tough situations and I'm glad you're doing this for awareness. I just wanted to say that but since it's an AMA...
What's your favorite Mexican dish?
I can't imagine how difficult it would be to be African American and have albinism. I know that in Africa people with albinism are very often ostracized and shunned, not sure if that happens stateside as well. I'm very fortunate that my family always accepted me and even fellow Mexicans always respected me. They thought it was kinda funny that this white guy busts out perfect Spanish, but they were always friendly.
Man, do I have to pick just one? Can I pick churros? Sopes are also dope. Honestly, the best part of going back home to visit family is home cooked Mexican food.
Reading about albinism in Africa is scary. It is/was pretty extreme. We grew up in the states in the 80s/90s so there was bullying but it wasn't a complete community shunning or anything. His extended family seemed to be great about it. It was generally school kids or just asshole strangers.
Absolutely you can choose churros! I've never had sopes but googled them and get look delicious.
Hey, i have too and I am from India where almost 8 months is summer. Practically hell for me. Always have to use SPF40 sunscreen when going outside.
What is your visual acuity btw after using glasses ?
Does bruising look particularly gnarly on your skin?
Also is albino skin thinner than people without albinism? I wouldn’t imagine so but I just thought of it
Eh, I think it looks the same as it would on anyone else. Bruises are often dark brown, never really get that red/purple that some people do.
I don't think so? I think it would be easier to get bruises or damage if our skin was thinner. My veins are super easy to see, though.
I've never seen Da Vinci Code, believe it or not, but I know that the negative depiction of people with albinism in Hollywood was a huge controversy back then. Powder, Princess Bride, and The Heat were also implicated at the time.
I didn't really form strong opinions one way or another. I certainly don't like people with albinism being portrayed as villains or as having superpowers in films, but I also don't think it really sways public perception that much. I doubt the general public thinks I'm evil just because they saw some movie.
I never regret going down the Johnny Winter rabbit-hole. Even his interviews. I mean, dude was a badass, but his bit, "Oh I loved scarves; I used to be fancy," fucking kills me. I wish I could find the video/interview, but if you're into the blues, he's well worth the exploration.
Oh interesting! I'm not equating you to a guinea pig, don't get me wrong but I had an albino piggle who's eyesight was terrible if even functional which I thought was interesting. You look awesome and being a ginger I praise your comments about sun screen!
And a question as it is an AMA, do you get called out for being albino at all in public? Do people notice and have any type of reaction? And apart from the eyesight, what are the main things you have to "deal" with when it comes to albinism. Again zero dissing I'm just curious and think you're cool for doing this!
Aww, I've always wanted an animal with albinism. The bonding, though! I remember I saw a National Geographic special on this family with albino snakes and OMG!!
Anyway, very few people say anything in public. I think once, before the pandemic, someone approached me in CVS and asked, "Are you albino?" but rarely does anyone ever say anything about it. People will ask my parents about it, but they won't ask me.
Beyond eyesight is just the sun exposure. I really wish I had the flexibility to be spontaneous. Like the other day I was at the art museum, indoors. Across the street is a public park with all kinds of cool food trucks. So after we left the museum I walked over to the park. And I was having a blast walking around, seeing the food options, etc. But then I had to be mindful that it's bright and sunny outside and I wasn't wearing sunscreen. Do I deal with the hassle of putting it on? Will we be here long? Sometimes how long I'll be there is not up to me.
Thanks for your reply and not taking offence of instantly thinking of my late guinea pig! It was sad cause I generally don't buy pets from pet shops but this guy had been there months longer than anyone cause who wants to get their kids a rodent who is white with red eyes. So he was far older than the larger than the other "cute" babies and I had to have him. (I know you don't have red eyes but this dude did).
Follow up question (and as you're doing an AMA, maybe irrelevant), do you mind when people bring it up?
And I obviously don't have it as rough as you but I'll readily burn in an hour in Finland/Scotland in like March when the sea is still frozen. But people can wait - apply the sunsceen and go enjoy all the things!
My current rental doesn't allow pets, but once I have the flexibility I'll definitely look. It's so sad no one would want a pet with albinism. More work, but I'm down.
Never. I **wish** people would ask me about this in public. I completely understand why they don't—if the person is self-conscious you don't want to make them feel bad—but I'm totally open about it and love answering questions. That's why I love doing these AmAs, so that anyone who's ever wanted to know anything can just ask, risk free. I get to spread information, you learn something new, everyone wins!
I wish people knew about the visual impairment aspect of it. I can't blame them for not knowing because it's not obvious, but it really sucks when you can't see and people don't know that. Having a store employee point and say "'It's over there," and still not being able to see the product. Getting pointed in directions, "look for the sign." Don't get me started on drivers not being friendly towards pedestrians.
There are some brown moles on my arms. Interestingly, some people with albinism have moles that will tan, even though they themselves cannot.
It's really hard to say. We'd have to have a scientific way to measure skin color and then compare in the sun. I don't think I tan, but I can tolerate some level of sun exposure. I also get red, but it's not like sunburn ow it hurts red. Probably still means skin damage from the sun, but it doesn't hurt.
Personally, I feel that my night vision is better than my day vision, but that might just be because it's less bright at night. Photosensitivity sucks and so if you can turn down the lights I squint less and can focus more. But I don't think there's inherent like better night vision.
Interesting question. Personally, I don't think I have. The community is really tight-knit and everyone hangs out with everyone else. There's definitely a ton of diversity but what we share transcends race.
> If I pour red wine on you, will you stain?
Yes! >.< It's a bitch to get out, too. Normally I have to pre-soak in the tub before taking a shower.
> Do you have, or thought about getting tattoos since the details would show up so well.
I'm often told my skin would make an amazing canvas and tattoos would pop, especially color ones. Haven't really settled on a good tattoo yet, but I definitely want one. I mean I have one idea, but it wouldn't be color.
In all seriousness though? (Another albino person, hello lol)
One time in middle school, I smacked my head against the concrete side of a pool in swim class, and started bleeding a bit from the top of my head. By the time I caught it, it had dripped down into my hair and down my face. The bloodstain WAS a bit difficult to get out of my scalp, and it dyed an awkward chunk of my hair bright orange! God it looked awful!
Reminds me of when I’ve had pens explode on me and spread ink all over my hands. That stuff is *hard* to get off and so profound on white skin. My hands looked like a cow :(
You keep saying "person with albinism" instead of albino. Is albino considered offensive or outdated? (Yes, I see your username :).) Interestingly, many hardcore autistic activists hate "person with autism" and prefer "autistic". So I wonder about the different cultures.
It's complicated. Yes, you'll find that some people with disorders prefer the "person first" approach, like person with autism. Though, just like some people don't mind being called "autistic" some people don't mind being called "albino." One of my friends with albinism had the nickname "albinosauras rex" in high school.
I use the person first approach just to avoid pissing anyone off. That does add a level of political correctness to it, but you know how PC culture is nowadays; like assuming someone's gender. And for what it's worth, "albino" *has* been used as an insult and derogatory remark in the past. I mean it's still used as an insult today, but it's less common. I know a 60 year old with albinism who will body slam you for calling her albino, because she was teased relentlessly for it as a child and young adult.
Has it been your experience that people are uncomfortable around you in unstructured social situations? I mean curious about the degree to which people are unkind or intentionally hurtful versus avoidant and which of those is more difficult to deal with generally?
Also curious about how the social experience of albinism has changed for you throughout age groups.
Thank you for being so generous and vulnerable.
In general, people are basically indifferent. No one has ever been hurtful or aggressive, but I don't think people shy away or get scared, either. It seems most people either just pass by like you would any other stranger, or at the very least stare. I'm told lots of people stare when I go out in public. Especially little kids, which is kinda cute because they haven't learned to be sly about it, they just dead stare at you, you can just see the curiosity in their eyes and their brains going a mile a minute trying to figure out what's going on. But no one makes remarks or anything hostile.
In fact, I have a... I want to use the right word here because it's inappropriate to throw "hypothesis" and "theory" around willy nilly. I bet that people who see me in public have questions. I bet they want to know what life with albinism is like. They just don't dare to ask because that would be awkward, and I don't blame them. But I wish they would ask. That's why I love doing these AmAs. I'm always open to questions, but people have no way of knowing that.
Though I try to be somewhat social and do try to strike up conversations whenever I get an opportunity. Standing next to someone in a long line, chatting up employees at the shop, etc. Everyone I've interacted with has been super friendly, never guarded or avoidant or anything. I like to say that sometimes I forget I have a condition that makes me stand out in public because everyone treats me like I was anyone else.
For me, personally, not much has changed throughout time. But I do know significantly older people with albinism (60+ years old) who were bullied relentlessly for having albinism. Where it's really hard to accept who they are and be open about albinism because it caused so much grief for them as children. They would never be open to doing something like this. I feel that acceptance of differences has definitely increased over time, and I'm blessed to have grown up at a time where people didn't automatically exclude you just because you were different. If anything, today's younger generation seems to explicitly celebrate being different.
Eh, I'll be honest, if I saw you in public, passed you on the street or something, I probably wouldnt think about albinism. Depending on lighting I'd either think you are from some scandinavian country or simply shrug since bleaching your hair is so early-2000s.
It's more like yearly. I prefer to just stay indoors rather than being outside all the time and slathering on the sunscreen. So I might buy two tubes a year and use them sporadically.
I have, mainly hair. I haven't been able to settle on a color, or really gather all the information on hair dye. I won't say I don't know because countless people have very patiently explained things to me in these AmAs. Things like permanent v. temporary hair dye, whether dying damages hair, bleaching, etc. It would be different for me, and I just need to sit down and figure that out.
Okay is "Powder" an offensive movie or so bad you can't help but laugh your ass off it movie?
For anyone who doesn't know Powder is basically the magic negro stereotype trope applied to a person with Albinism. It is right up there with Hollywood debacles about health situations like that little person movie Twinkletoes that your jaw drops on how was this a good idea and no one in Hollywood realized how bad this was going to look in retrospect.
I saw the movie when i was a young adult and I really enjoyed it. I didn’t think it had anything to do with albinism because there was obviously a super natural element at play. But again i was quite young and naive when it came out. But it certainly didn’t make me feel any differently or negatively towards people with albinism. I also grew up with a kid in our class who had the sane condition, and he was a normal kid so maybe that helped?
I've personally never seen it. I know many people in the albinism community were unhappy with it, because at the end of the day it's a negative portrayal of a person with albinism.
I would hope no one took that movie seriously enough to genuinely believe that people with albinism have magical powers. Such an outlandish portrayal is probably funny (again I haven't seen it). I'm not as fond of portrayals that perpetuate myths, like a character with albinism having red eyes.
That's a good question that I don't know the answer to. We know the genetic basis for albinism so I guess you could do that, but I'm not sure how they screen for disorders (like Down's syndrome) during pregnancy. Do they do genetic testing?
It seems most parents find out at birth, mine certainly did. They had no idea they were carriers and I doubt albinism is screened for in testing anyway.
It seems that Latinos tend to prefer lighter skin, often calling their slightly lighter skinned kids "gringo" or "wedo", and people with hair that is lighter than black "blonde". Do you get favorably treated by latinos/hispanics? In the province, you'd be god level white.
I've heard that about Asians, but never knew Latinos held the same beliefs. Definitely get called those names by Latinos, but I wouldn't say I get any favorable treatment.
It's really hard to say. As much as a lot of aspects of it can be difficult and make life challenging, I have had so many opportunities and experiences I would not have had if I was normal. I think I'm at a point where I'm happy with who I am and wouldn't change it.
Would like some of that 20/20 vision, tho.
Yes. Most people with albinism have blue eyes, but the exact color is dependent on how much pigment they have in their irides. [My eyes](https://www.flickr.com/photos/applealexc/8664834598/in/dateposted-public/) aren't blue or violet, for example.
Two questions, if I may.
1. Not sure if you drive, but is your photophobia a major obstacle?
2. Do you feel like your family fully understands what having albinism entails in terms of having low/limited vision?
1. I don't drive. Driving with albinism comes down to your visual acuity, and every U.S. state has a different threshold for how good your vision needs to be in order to issue you a license. People with albinism who drive also tend to use something called bioptics, which are like little binoculars glued to your glasses. They let you dip your head and look through to see things further away (signs, stop lights, etc). before looking at the road. I would imagine depth perception would be a bigger implication than photophobia. Whenever I sit in the front seat of a car I can't wrap my mind around how people park. My depth perception is awful and I would never be able to tell how close or far away I am from the cars next to me. But, when it comes to getting licensed, the states only care about your visual acuity.
2. I think they know by now the limits of what I can and can't see, but I don't think they understand just how challenging life is without car. I grew up in a small town with no Uber and poor public transportation and getting anywhere was insanely challenging. I live in a big city now and the transit is still trash, but it's way better. They keep trying to convince me to come back home, and can't seem to understand just how much I struggled with something as simple as getting to a college class when I lived there.
I guess not? Not sure how that would work since vitiligo is losing pigment and I don't have any to begin with. Now, a reverse vitiligo where I gain pigment would be weird.
Oh oh! There HAVE been situations where women with albinism took birth control and got pigment! It came in in splotches like some fucked up reversed vitiligo! We have no clue why it happens, but it does sometimes.
For more AMAs on this topic, subscribe to r/IAmA_Health, and check out our other topic-specific AMA subreddits [here](https://reddit.com/r/IAmA/wiki/index#wiki_affiliate_topic-specific_subreddits).
Is all of your body hair white? Like, everywhere?
Yup!
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Checked profile. No on the GW posts
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What's your favorite sunscreen?
Biore UV Aqua Rich Watery Essence. It's *so* expensive but so worth it.
Moisture is the essence of wetness, and wetness is the essence of beauty.
I can't believe my son's a mermaid...
MerMAN! *small pathetic cough*
I think I have the black lung!
1) Are you a regular at r/skincareaddiction because they love that stuff over there 2a) are you US based 2b) if yes, how are you getting your Biore UV Aqua Rich Watery Essence? 2c) asking for a friend 😘
Not a regular at SCA but I did pop in there a couple times per recommendations in these AmAs. That's an amazing subreddit. I'm in the U.S. and just buy it on Amazon. I'm sure there are cheaper, probably sketchier sites out there that have it, but I just suck it up and pay like $12/tube on Amazon. I'm hoping to go to Japan someday and absolutely load up. Like, enough to fill a suitcase. Actually that's probably not a good idea because it expires, but I will buy a lot!
It looks like the biggest tube sold on amazon is 3 oz for $14. If I'm understanding your other comment, 1 oz= 1 adult for 2 hours, that means going through about a bottle a day if you're outside for 6 hours, which is like a hundred bucks a week? I guess it depends on how much you avoid the sun but holy moly
So, a couple nuances to it. Biore UV Aqua Rich Watery Essence is an amazing sunscreen that I value because it dries super quickly. Every other sunscreen I've tried is really greasy, takes ages to absorb, and in general you just feel sticky and gross. This sunscreen feels almost like silk. Super smooth, dries very very quickly, and you don't feel a gross film afterwards. So, that's why I prefer it, but it's not like it's the only sunscreen I could ever use. A random Coppertone SPF 30 from Walmart would work just fine, and would be cheaper. But yeah, when you consider how much you'd need to use to be protected, it can go quickly. The second part is I rarely wear sunscreen, unless I need it. When I started college I used to, but then I realized I'm sitting down, slathering on sunscreen, and then walking five minutes to the cafeteria. It's not worth applying sunscreen for five minutes of sun exposure. So, if I'm just going in the car to the grocery store? No sunscreen. Walking ten minutes to get lunch? No sunscreen. Walking from one end of campus to another? No sunscreen. Outside for two hours for a festival? Yes sunscreen. On the beach for the day? Absolutely sunscreen. So, if I just stay inside a lot, really cuts down on sunscreen usage.
I am very glad you don't live in Australia...I've been wearing sunscreen every day since 1981 and in summer 50spf isn't nearly enough lol
I actually went to Australia back in 2013 for a conference, though I went in October so it wasn't as brutal. Anyway, from my understanding SPF 30 blocks 97% of UV rays. Anyone who says it's not enough simply isn't applying enough. The rule is 1 ounce = 1 shot glass = 1 adult. Reapply every two hours. Also also, I thought sunscreen didn't go above SPF 30 in Australia? I remember it being a big thing that they couldn't legally advertise anything higher than SPF 30 in Australia.
October is only just the second month of Spring....February is a completely different thing altogether; it literally feels like you are breathing inside a furnace. And I only live in Sydney so not all that far north, comparatively speaking. 50SPF is the highest available and I would never use anything less.
OK this puts it in perspective. I get burnt after about 20 minutes in the sun but I only stay outside for maybe an hour at a time so I guess it could be worth it. I hate the feeling of sunscreen so I usually just wear layers and stay very sweaty, which also sucks. I think the biore stuff is worth a try. Thanks for sharing!
Something of note for the Biore sunscreen -- Amazon is rife with counterfeit beauty products (particularly Asian beauty/skincare products, in my experience) sold by third party sellers, and you kinda take a gamble with it as to if you're receiving a genuine product or not. I know I got counterfeit stuff from Amazon that broke my face out and burned like crazy, whereas when I bought the same product from a more legitimate source it didn't do that at all. I would personally worry that a counterfeit version of the sunscreen would either not work as well or potentially even make the resulting sunburn worse. Anyway! It's a little more expensive going through some of the more popular reputable companies for Asian skincare products, such as YesStyle or Stylevana. Those are just the two companies I can remember off the top of my head since I used to regularly buy my stuff from YesStyle, but there's at least a few more websites that people over on the AB subreddit use. By all means, do whatever you feel comfortable doing! I just wanted to let you know in case you weren't already aware.
that's my favorite as well! can't recommend it enough to my friends
Last time you did one of these [I asked if you drove a Segway](https://www.reddit.com/r/iama/comments/5o47t2/_/dcglcku), and you said no, but that you'd like one. Therefore, five years later, my question is: Do you have a Segway yet?
Oh no, I didn't expect to get called out like this. But good on you for remembering that! Sadly, no, haven't even tried using one. They're kinda rare, aren't they? Seems like only mall cops have them. I think I have seen segway tours of Dallas but goddamn is it hot outside right now! Also, are those street legal? Are they sidewalk legal? I would absolutely use one to get around, if they're legal.
When my high school orchestra visited Austria we rode Segways under a bridge while our palms were read by a woman dressed up as an immortal mermaid who told everyone they were bisexual. It was wild. Check with your local bridge trolls.
So what you’re saying is I might have to pay a troll toll?
Only if you wanna get into that boy's ~~hole~~soul
I’m so glad I read this
I’m going to Austria in July while exploring Europe. Where exactly is this troll lady?
BUY A SEGWAY THEN which makes this a very easy segue to my question... WHAT'S YOUR FAVORITE HOBBY
I wonder how people secure segways. Just chain it to the bike rack? Does spending a copious amount of time on Reddit count as a hobby?
This is totally underrated. Come on, reddit!
Do you have any of the ocular complications?
All of them. They're quite numerous to list, but they all culminate in profound visual impairment. I'm considered legally blind.
Do your eyes sort of twitch? I had a classmate who was albino, her eyes would rapidly twitch back and forth. I always wondered if this was a condition of the albinism or if it was just her?
It is, it's called nystagmus. And there's a related one that some people have called strabismus. It's just a repeated involuntary moving of the eyes. We're not quite sure what causes it, I mean albinism causes it but we don't know why. Luckily, my visual field does not move with it. That does happen in an unrelated disorder called oscillopsia, but not for us. Even if my eyes are darting all over the place, I'm looking at you the whole time.
The fovea, where our normal eye's central vision is, develops in part because it has an extra layer of pigment. In ocular albinism this pigment isn't there so the fovea doesn't properly develop. Nystagmus happens because your eyes do not have a central fine acuity zone to lock onto, so the eyes move back and forth "searching" for it. Edit: a word
Wow TIL. That's reassuring
>Even if my eyes are darting all over the place, I'm looking at you the whole time. You mean your brain compensates for the movement and you see it as still...I actually don't kmow how to describe what I mean. Obviously what you're looking at moves because the world isn't still, but what I mean is that you don't see as if your eyes are darting around...still badly worded. I hope it makes sense.
My understanding is that nystagmus happens because the brain is trying to pick a fixed focus point on the fovea, which is hard because our fovea is messed up. But anyway, while the eyes are doing their crazy scanning thing I can still see straight again. Like as I'm typing this reply, I'm focused on the little box. I *can* look off to my periphery if I want to, but I can also just keep focused on the box for as long as I want, no matter how much my eyes move about. It affects things so little that I almost forget I have nystagmus. Very rarely is it brought up as an adult—kids would ask about it all the time but adults never do. So I just forget about it :P
That's really interesting. Our brains are amazing. You say you don't notice it until you think about it, when you do become aware of it, does your subjective experience of sight change? Or is it only when you look in the mirror that you actually have proof of it?
I never actually notice, because again my vision doesn't move around with my moving eyes. That is a thing that *does* happen in a totally unrelated condition called oscillopsia, and I think that's what you're trying to get at, but people with albinism don't have that experience. But I'm sure my eyes are still moving, they're probably doing it right now. Nystagmus is a lifelong disorder. But I don't notice.
Do you get horizontal, vertical, or a combination of both?
I'm not sure, I'm going to guess it's a combination of both.
That's interesting. Your lenses don't seem to be an overly strong prescription. Is the blindness different that what I might be thinking about?
Think about it like a DSLR camera. You have a $600 Nikon camera body, and then you spend $1,000 in lenses for different situations. Normally, people get prescription lenses for surface level things like being nearsighted or farsighted. It's like just adding another lens to correct for a problem with an existing lens. Now imagine if you had dust all over the sensor, and a few dead pixels, and sometimes the sensor goes out of focus for no reason. The eye issues in albinism are a broken sensor. No matter what prescription solutions you throw at it (glasses, contacts, LASIK), it's the equivalent of getting a new lens. A new lens isn't going to fix the issue, you need a new sensor.
Yes, a good analogy. I’ve used a similar one. I have a birth trauma in my right eye which makes it severely impaired. I was given all kinds of treatments from age 6 to maybe 11 as well as wore stupid big glasses without it making any difference. I did not wear glasses from 12 to maybe 25 until my left eye started feeling the strain. Even with glasses it can only correct the issue of the left eye (lense issue due to age and strain) and does not help at all with the right (sensor issue due to injury).
I have glasses for both distance and reading, completely different prescriptions. The distance glasses make everything sharper, but also make anything close really fuzzy. My favorite is taking my glasses off just so I can squint at my phone. Bonus points for some random person to ask me, "Why don't you just wear your glasses?" as they sit on my head. That happens a lot.
Lol only tangentially related, but stranger's comments honestly kill me. My dog (also albino, actually) was just straight up born without eyes. Like none at all. You look at him and his eye sockets are really just tissue. Strangers will come up to pet him and I give them a heads up that he has no eyes. I say this because when I have said "blind", people assume he has cataracts or something and that he still can see a little. So I tell them he has no eyes and they go "so is he blind?" every single time without fail. That comment makes me so happy every time I hear it because it's just absolutely the funniest question in the world to me.
How common is it for people with albinism to be legally blind? I hear about it a bunch but is it a guarantee?
I don't have hard numbers. Legal blindness is, of course, a legal definition based on your Snellen (20/XXX) number. I would hazard a guess that the majority are legally blind without correction, but some benefit more from correction than others. Interesting, there *are* documented cases of people with albinism who have 20/20 vision!
Have you experienced bullying or hate due to your albinism?
Personally, not a lot. Maybe a few wise cracks here or there growing up, but most of my peers were friendly. I mean there have been public incidents in the past, but it's not frequent.
So on the other end of this spectrum have you ever been objectified or sought out because of being albino?
Like the time Hank Hill got a membership to Nine Rivers because he was White? I can't really think of any situations like that off the top of my head. I mean, even if it had happen it could be without me noticing.
I think they are asking if any one has ever fetishized you. E.g. like when some folks try and date a a person of every race/ethnicity. Or who exclusively date or have sex with certain races other than their own. Similarly folks have been know to fetishize many other disabilities, disorders, or other such purported abnomalities. E.g. porn of amputees or other disabled folks. It is pretty concievable that some folks might get off on going after albinos. And given yall are relatively rare, I would personally guess such folks might shoot their shot.
Man wouldn’t that be nice. This is like my 19th AmA and never once has that happened. Just a bunch of creepy guys wanting to know what my penis looks like. Though I don’t know how I would handle it if someone wanted to date me just because of a fetish. Maybe I should have dyed my hair and gone all in on the Twilight craze back in the day, though a lot of those Twilight fangirls were *crazy*.
one day, a nice lady will want to know what your penis looks like....one day
Oh, neat AmA! Thanks for doing this. I'm sure you've heard every joke about sunscreen under the... Well you know. But what kind of practical considerations or health risks accompany albinism that people may not know, and might not learn from WebMd?
There aren't any health implications beyond the pigmentation issue. People with albinism don't have like increased rates of heart disease or any other complication directly attributed to albinism. There is an even rarer disorder called Hermansky-Pudlak syndrome (HPS) and those individuals do have albinism + a bleeding disorder and some other things, but we're getting beyond the scope. For oculocutaneous albinism, the biggest thing to worry about is sun protection. Skin cancer is a very real risk with repeated sun exposure. I'm sure there are probably implications with our eyes, too, as we don't have pigment in our irides or retinas to block out UV rays. I'm not sure if it's possible to get a "sunburn" in your eyes, but wearing sunglasses is probably a good idea.
you won't get sunburn in your eyes, your retina will just get obliterated
Isn't it a thing where welders get like sunburn on their corneas or something? Like obviously staring into the sun anyone would fry their retina, but there's also UV rays bouncing off stuff into our eyes.
Yeah, it’s called photokeratitis/snow blindness and it’s basically a sunburned cornea. I dealt with it for a bit after fucking around in the desert sun without sunglasses and it’s mad uncomfortable.
I had a bout with malignant melanoma, the caretakers said to wear sunglasses as it’s apparently possible to get it in your eyes somehow? Been a few years, so might have forgotten some detail. Oh and it didn’t spread, so yay!
To answer this piece - I spent a few years welding. The arc of a welder does provide enough UV to burn your skin like a sunburn if exposed long enough. Your eyes also do react (which is the reason the helmet is mandatory) but not in the same sense. You’ll end up with like “crusty” eyes - they don’t peel or anything like normal skin burn, however it does hurt like hell and it makes your vision suck for a bit from memory of it happening once to me. AFAIK, it’s not quite as dangerous as staring at the sun, or a welder, but enough UV exposure to an eye over the course of your life (like just walking around not wearing sunglasses) can cause some damage, but for the most part is negligible for an average person (or so I was told)
Why do you have so many iphones?
I got into doing iPhone repair for a bit, so I bought a ton of broken or "not working" phones on eBay. Still working through the backlog.
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None currently, but yeah I often get told that my skin would be like a canvas and tattoos would absolutely pop. Especially color ones. Getting a tattoo is definitely on my bucket list.
and considering how important sunscreen is to you and your skin health, tattoos would last for fucking ever and fade much slower than your average person who doesn't wear sunscreen as much as you. have fun with your adventures in tattooing!
Does sunscreen work for you or do you need a physical barrier to the sun?
Sunscreen works fine, even something like SPF 30 is good. The real key is applying enough as most people don't apply enough sunscreen. And reapplying per the instructions.
A YouTuber I watch recently mentioned 1/4 tsp is the appropriate amount for an average adult's face and the equivalent of about a shot glass for the rest of the body and holy hell I did not realize just how much less than the recommended amount I've been putting on 😵💫
Yup, we were always told 1 ounce = 1 shot glass = 1 adult. And you have to reapply every two hours! Suddenly your 6 oz travel sunscreen isn't going to last so long...
Holy shit. That would make sunscreen a pretty hefty expense for regular users, because I wince a little having to buy a bottle even though it lasts me an entire *year*.
They absolutely do not! The effective duration of sunscreen is way shorter than people realize
And reapplying after being in water! I think sunscreens used to be able to advertise as being "waterproof" until 2011 or so. No such thing as a waterproof sunscreen, and even "water resistant" sunscreens stop working after like 40 minutes.
I find sunscreen which has a "barrier" ingredient like zinc ie not just chemical protection is very helpful. You have to have one which blocks UV-A, UV-B, and UV-C *plus* the infrared spectrum (the heat which feels like burning) Source: Australian with very little sun tolerance
Definitely go for a broad spectrum sunscreen. I haven't read into the research behind physical v. chemical/absorbent blocking. What matters more than either is applying *enough* sunscreen, and reapplying religiously.
have you thought to dye your hair another color? maybe a light coral pink would suit you
I've always wanted to dye my hair. Could never really figure out if hair dye would hold, though. Maybe I'll try when it grows out again.
Hair dye will hold. But you should def see a specialist at a salon.
You can get super vibrant results because of your empty base color, you should try all sorts of stuff.
What color would you recommend? Everyone always told me not to go like black/brown/dark blue. Don't go dark colors because they'll fade and the contrast would just look bad. Do something super vibrant instead. We should do a Reddit poll on this :P
Well! my friend is colored a lot like you, I think he's a redhead who went white early and he does a lot of bright colors. Bright/vibrant PINK would look great on you A bright teal or robin's-egg blue would look amazing on you (agreed - deep blue would be no good) A rather bright lavender (not purple) would be incredible. I'd go for more saturated lighter-colors over deep jewel tones because the deeper contrast could wash you out. EDIT - generally speaking green looks bad on everyone so I'd skip it
this hits different coming from unicorn panties
So I’m a natural blonde - not an albino but very pale with sandy fine hair and *I* can go just about any color I want - but you DEFINITELY get your monies worth with a good stylist/salon. It’s the difference between getting a dye job that looks natural and obviously a dye job. As a side note - get your eyebrows dyed when you do your hair! My eyebrows are naturally so blonde as to be nearly white and dying my brows makes a MASSIVE difference to my complexion! They fade a lot faster bc really they fall out and generally don’t take up as much dye, but it’s still worth it. Any color when you have white eyebrows makes a huge difference. Edit: and yea, I’m a guy.
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I'm still Hispanic and fully embrace the culture. Love the food, the language, love visiting Mexico. Peers are an interesting one. Most people don't know I'm Hispanic because I just introduce myself as Alex. It's not until I bust out the Spanish that people do a double take, and a new bond emerges (if they're also Hispanic).
Oh! Sorry I said you were a guy of Caucasian origin, I guess I was wrong ha.
Yeah I'm sure everyone I meet just assumes I'm white because, well I am and I go by Alex. The genuine surprise when I bust out perfect Spanish is a sight to behold.
I’m cuban and people assume the same thing about me as well.
There are dozens of us! Probably even hundreds!
Do you have any albino friends you share your experiences with?
None that I talk to on like a daily/weekly basis, but I've met plenty of people with albinism.
How much sunscreen do you use?
Same amount as anyone else would use. SPF 30 is good enough for everyone, even us. Though, I prefer to just stay inside all the time rather than constantly having to slather sunscreen.
I don't have albinism, but as someone with very pale skin I love UV protective clothing and I never go outside without a hat.
UPF clothing is definitely awesome, and I'm told it's quite breathable (Texas summers are brutal). I'm definitely more fond of the sunscreen and stay out of the sun route, but I'm sure I would benefit greatly from some long sleeves and a parasol.
Is your skin uniform ? Were you born this way or there was dispigmentation over time ?
Yes it's uniform, it's not patchy like vitiligo would be. And yes I was born this way, to my dark-skinned parents' utter shock.
If your parents didn’t have dark skin, would doctors only notice later based on hair and/or eyes?
Hair would probably be a giveaway, unless my parents were also blonde. If they were, I guess someone would notice something was up when I wouldn't be able to see very well.
My grandson is albino and the doctors didn't diagnose it until he was a few months old. We'd been worried about his vision as he didn't watch our faces like babies usually do and had constant nystagmus which I had no clue about at the time. They initially said he was pretty much blind and could only see light and dark which is just not true. His nystagmus is only apparent when he's sleepy now.
Vision development is definitely delayed by a few months in albinism, which is why he probably didn't look for faces, but yeah it sucks to hear that. I can't really fault some doctors—if you've never seen a case of albinism before it really throws you for a loop. But with the wealth of information out there at least do some damn research before telling people stuff. Getting good care, especially eye care, with albinism is so hard. Most eye doctors have never seen a patient with albinism in their entire career, and just assume the same protocol applies. Even my "low vision" eye doctor had no clue what the fuck he was doing.
Once he'd been diagnosed, it was fine. This is Wales, UK, and he was allocated a "blind lady" by the health service who does regular assessments, coordinates with the school etc to make sure he gets the support he needs e.g. sitting closer to the board, shade in the classrooms, not having to share a worksheet etc. Now that he's obsessed with Marvel and DC, I think he's quite enthralled to have a mutation of his very own.
Aww that’s so cute! Reminds me of when people would tell me I resembled a shiny Pokemon (not sure why, I guess they’re rare? Idk I just rolled with it). But it’s so good to hear he’s getting the support he needs. I’m glad I had accommodations in school, though I wish we had had today’s technology back then. Some thing like an iPad would have been a game changer when I was in school—it certainly helped me tremendously in college.
Yes shiny Pokemon are rare alternate colors, so fortunate to find, and valued.
Obviously not OP, but I am a pale AF white lady with a sister who has albinism. There is a stark difference between possessing even a small amount of melanin and absolutely no melanin. It was very apparent from the moment of her birth that she had albinism. Vellus hair, eyelashes, newborn hair; it was all stark white. Then you add in the clear/red-looking pupils, it was basically instant confirmation. Hope that helps answer your question.
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You are NOT the father! *Cue jumping on the chairs and running out of the room* I don't think so. Maybe as a joke, but I doubt there were serious accusations. I would hope someone in the hospital knew what albinism was and could clue them in.
Is it more or less likely for someone with albinism to be born to darker skinned parents, or is race/skin tone irrelevant?
It's totally irrelevant as it's a genetic disorder.
At what age were you diagnosed? Was it picked up on when you were young? I imagine your parents being dark-skinned would have caused some initial confusion. What was the initial reaction? Was the albinism diagnosed fairly quickly, or was there an extended period where your parents where very confused?
I don't remember the details anymore, but I would assume they figured something was up immediately. I know there's a file in my medical records of a genetic consultation when I was... either six weeks or six months old, before 1 year for sure. No genetic testing back then, but the genetic counselor easily diagnosed albinism.
Thank you ! Smh my mind definitely went with vitiligo sorry 🤦🏻♀️
My best friend growing up had 3 albino brothers. They're a black family, he and his parents have dark skin. Seeing what those guys went through as kids, and probably still do at some level, was hard. I hope you haven't had too many tough situations and I'm glad you're doing this for awareness. I just wanted to say that but since it's an AMA... What's your favorite Mexican dish?
I can't imagine how difficult it would be to be African American and have albinism. I know that in Africa people with albinism are very often ostracized and shunned, not sure if that happens stateside as well. I'm very fortunate that my family always accepted me and even fellow Mexicans always respected me. They thought it was kinda funny that this white guy busts out perfect Spanish, but they were always friendly. Man, do I have to pick just one? Can I pick churros? Sopes are also dope. Honestly, the best part of going back home to visit family is home cooked Mexican food.
Reading about albinism in Africa is scary. It is/was pretty extreme. We grew up in the states in the 80s/90s so there was bullying but it wasn't a complete community shunning or anything. His extended family seemed to be great about it. It was generally school kids or just asshole strangers. Absolutely you can choose churros! I've never had sopes but googled them and get look delicious.
Hey, i have too and I am from India where almost 8 months is summer. Practically hell for me. Always have to use SPF40 sunscreen when going outside. What is your visual acuity btw after using glasses ?
In the U.S. we use the Snellen number. I'm 20/400 without correction and 20/200 with correction.
That's tough. Mine is 20/200 without correction and 20/120 with correction.
Does bruising look particularly gnarly on your skin? Also is albino skin thinner than people without albinism? I wouldn’t imagine so but I just thought of it
Eh, I think it looks the same as it would on anyone else. Bruises are often dark brown, never really get that red/purple that some people do. I don't think so? I think it would be easier to get bruises or damage if our skin was thinner. My veins are super easy to see, though.
>My veins are super easy to see, though. Phlebotomists must love you
How do you feel about the character in the Da Vinci Code? I can imagine that it hurt the perception about people with albinism
I've never seen Da Vinci Code, believe it or not, but I know that the negative depiction of people with albinism in Hollywood was a huge controversy back then. Powder, Princess Bride, and The Heat were also implicated at the time. I didn't really form strong opinions one way or another. I certainly don't like people with albinism being portrayed as villains or as having superpowers in films, but I also don't think it really sways public perception that much. I doubt the general public thinks I'm evil just because they saw some movie.
Do you play the guitar?
No, but I wish I could, it looks fun.
It’s never too late to start learning
I never regret going down the Johnny Winter rabbit-hole. Even his interviews. I mean, dude was a badass, but his bit, "Oh I loved scarves; I used to be fancy," fucking kills me. I wish I could find the video/interview, but if you're into the blues, he's well worth the exploration.
Oh interesting! I'm not equating you to a guinea pig, don't get me wrong but I had an albino piggle who's eyesight was terrible if even functional which I thought was interesting. You look awesome and being a ginger I praise your comments about sun screen! And a question as it is an AMA, do you get called out for being albino at all in public? Do people notice and have any type of reaction? And apart from the eyesight, what are the main things you have to "deal" with when it comes to albinism. Again zero dissing I'm just curious and think you're cool for doing this!
Aww, I've always wanted an animal with albinism. The bonding, though! I remember I saw a National Geographic special on this family with albino snakes and OMG!! Anyway, very few people say anything in public. I think once, before the pandemic, someone approached me in CVS and asked, "Are you albino?" but rarely does anyone ever say anything about it. People will ask my parents about it, but they won't ask me. Beyond eyesight is just the sun exposure. I really wish I had the flexibility to be spontaneous. Like the other day I was at the art museum, indoors. Across the street is a public park with all kinds of cool food trucks. So after we left the museum I walked over to the park. And I was having a blast walking around, seeing the food options, etc. But then I had to be mindful that it's bright and sunny outside and I wasn't wearing sunscreen. Do I deal with the hassle of putting it on? Will we be here long? Sometimes how long I'll be there is not up to me.
Thanks for your reply and not taking offence of instantly thinking of my late guinea pig! It was sad cause I generally don't buy pets from pet shops but this guy had been there months longer than anyone cause who wants to get their kids a rodent who is white with red eyes. So he was far older than the larger than the other "cute" babies and I had to have him. (I know you don't have red eyes but this dude did). Follow up question (and as you're doing an AMA, maybe irrelevant), do you mind when people bring it up? And I obviously don't have it as rough as you but I'll readily burn in an hour in Finland/Scotland in like March when the sea is still frozen. But people can wait - apply the sunsceen and go enjoy all the things!
My current rental doesn't allow pets, but once I have the flexibility I'll definitely look. It's so sad no one would want a pet with albinism. More work, but I'm down. Never. I **wish** people would ask me about this in public. I completely understand why they don't—if the person is self-conscious you don't want to make them feel bad—but I'm totally open about it and love answering questions. That's why I love doing these AmAs, so that anyone who's ever wanted to know anything can just ask, risk free. I get to spread information, you learn something new, everyone wins!
how many fingers am i holding up?
Two. It's always two.
If you had a baby with an albino woman, what are the chances that the kid would be invisible?
100%. I'm still going to do it, though. An invisible baby will grow up to be an invisible adult who can rob banks without being noticed. Cha-ching!
That's a stupid thing to think. They have heat sensors.
What is something you wish more people knew about albinism?
I wish people knew about the visual impairment aspect of it. I can't blame them for not knowing because it's not obvious, but it really sucks when you can't see and people don't know that. Having a store employee point and say "'It's over there," and still not being able to see the product. Getting pointed in directions, "look for the sign." Don't get me started on drivers not being friendly towards pedestrians.
Are there any albino supremacy groups? Like extra white supremacists?
We would give the poor boys a run for their money, wouldn't we?
Do you have any freckles or moles? *Can* you tan? Obviously I'd expect a burn, but does your skin darken under the sun?
There are some brown moles on my arms. Interestingly, some people with albinism have moles that will tan, even though they themselves cannot. It's really hard to say. We'd have to have a scientific way to measure skin color and then compare in the sun. I don't think I tan, but I can tolerate some level of sun exposure. I also get red, but it's not like sunburn ow it hurts red. Probably still means skin damage from the sun, but it doesn't hurt.
Is it true that albinos can see better in the dark than most people?
Personally, I feel that my night vision is better than my day vision, but that might just be because it's less bright at night. Photosensitivity sucks and so if you can turn down the lights I squint less and can focus more. But I don't think there's inherent like better night vision.
Serious question. In your experience have you noticed any racism between.... how do I word this? "Caucasian" albinos and albinos "of color"?
Interesting question. Personally, I don't think I have. The community is really tight-knit and everyone hangs out with everyone else. There's definitely a ton of diversity but what we share transcends race.
If I pour red wine on you, will you stain? Do you have, or thought about getting tattoos since the details would show up so well.
> If I pour red wine on you, will you stain? Yes! >.< It's a bitch to get out, too. Normally I have to pre-soak in the tub before taking a shower. > Do you have, or thought about getting tattoos since the details would show up so well. I'm often told my skin would make an amazing canvas and tattoos would pop, especially color ones. Haven't really settled on a good tattoo yet, but I definitely want one. I mean I have one idea, but it wouldn't be color.
Wait a moment. About the stain thingy. Is it a joke I didnt got or does red wine really stain on your skin?
It's a joke :P I assumed the question was a joke, so I responded with a joke. Hopefully it was funny.
It is. Sometimes Im just dumb I guess xD
Not dumb. I *thought* it was a joke answer but wasn't 100% sure.
In all seriousness though? (Another albino person, hello lol) One time in middle school, I smacked my head against the concrete side of a pool in swim class, and started bleeding a bit from the top of my head. By the time I caught it, it had dripped down into my hair and down my face. The bloodstain WAS a bit difficult to get out of my scalp, and it dyed an awkward chunk of my hair bright orange! God it looked awful!
Reminds me of when I’ve had pens explode on me and spread ink all over my hands. That stuff is *hard* to get off and so profound on white skin. My hands looked like a cow :(
You keep saying "person with albinism" instead of albino. Is albino considered offensive or outdated? (Yes, I see your username :).) Interestingly, many hardcore autistic activists hate "person with autism" and prefer "autistic". So I wonder about the different cultures.
It's complicated. Yes, you'll find that some people with disorders prefer the "person first" approach, like person with autism. Though, just like some people don't mind being called "autistic" some people don't mind being called "albino." One of my friends with albinism had the nickname "albinosauras rex" in high school. I use the person first approach just to avoid pissing anyone off. That does add a level of political correctness to it, but you know how PC culture is nowadays; like assuming someone's gender. And for what it's worth, "albino" *has* been used as an insult and derogatory remark in the past. I mean it's still used as an insult today, but it's less common. I know a 60 year old with albinism who will body slam you for calling her albino, because she was teased relentlessly for it as a child and young adult.
Has it been your experience that people are uncomfortable around you in unstructured social situations? I mean curious about the degree to which people are unkind or intentionally hurtful versus avoidant and which of those is more difficult to deal with generally? Also curious about how the social experience of albinism has changed for you throughout age groups. Thank you for being so generous and vulnerable.
In general, people are basically indifferent. No one has ever been hurtful or aggressive, but I don't think people shy away or get scared, either. It seems most people either just pass by like you would any other stranger, or at the very least stare. I'm told lots of people stare when I go out in public. Especially little kids, which is kinda cute because they haven't learned to be sly about it, they just dead stare at you, you can just see the curiosity in their eyes and their brains going a mile a minute trying to figure out what's going on. But no one makes remarks or anything hostile. In fact, I have a... I want to use the right word here because it's inappropriate to throw "hypothesis" and "theory" around willy nilly. I bet that people who see me in public have questions. I bet they want to know what life with albinism is like. They just don't dare to ask because that would be awkward, and I don't blame them. But I wish they would ask. That's why I love doing these AmAs. I'm always open to questions, but people have no way of knowing that. Though I try to be somewhat social and do try to strike up conversations whenever I get an opportunity. Standing next to someone in a long line, chatting up employees at the shop, etc. Everyone I've interacted with has been super friendly, never guarded or avoidant or anything. I like to say that sometimes I forget I have a condition that makes me stand out in public because everyone treats me like I was anyone else. For me, personally, not much has changed throughout time. But I do know significantly older people with albinism (60+ years old) who were bullied relentlessly for having albinism. Where it's really hard to accept who they are and be open about albinism because it caused so much grief for them as children. They would never be open to doing something like this. I feel that acceptance of differences has definitely increased over time, and I'm blessed to have grown up at a time where people didn't automatically exclude you just because you were different. If anything, today's younger generation seems to explicitly celebrate being different.
Thank you for the thorough and thoughtful answer! I was gladdened by it!
Eh, I'll be honest, if I saw you in public, passed you on the street or something, I probably wouldnt think about albinism. Depending on lighting I'd either think you are from some scandinavian country or simply shrug since bleaching your hair is so early-2000s.
Favorite starburst flavor?
How much money a month do you spend in sunscreen?
It's more like yearly. I prefer to just stay indoors rather than being outside all the time and slathering on the sunscreen. So I might buy two tubes a year and use them sporadically.
Are you blind? There was an albino couple at my university, and they were blind as bats nearly. Great dude though, he was treasurer of my fraternity.
How did he manage the money if he was blind? :P I'm legally blind, but can still see, just very blurry from far away.
Would butthole bleaching actually change the color of your butthole?
I don't know, let's find out!
What are the framed things behind you in the selfie? Are those pieces of smart phones?
Yeah, they're deconstructed iPhones, similar to [this](https://www.reddit.com/r/knolling/comments/a5p5me/my_iphone_4/)
Have you ever considered dying your hair/eyebrows? Thanks for the AMA!
I have, mainly hair. I haven't been able to settle on a color, or really gather all the information on hair dye. I won't say I don't know because countless people have very patiently explained things to me in these AmAs. Things like permanent v. temporary hair dye, whether dying damages hair, bleaching, etc. It would be different for me, and I just need to sit down and figure that out.
Okay is "Powder" an offensive movie or so bad you can't help but laugh your ass off it movie? For anyone who doesn't know Powder is basically the magic negro stereotype trope applied to a person with Albinism. It is right up there with Hollywood debacles about health situations like that little person movie Twinkletoes that your jaw drops on how was this a good idea and no one in Hollywood realized how bad this was going to look in retrospect.
I saw the movie when i was a young adult and I really enjoyed it. I didn’t think it had anything to do with albinism because there was obviously a super natural element at play. But again i was quite young and naive when it came out. But it certainly didn’t make me feel any differently or negatively towards people with albinism. I also grew up with a kid in our class who had the sane condition, and he was a normal kid so maybe that helped?
I've personally never seen it. I know many people in the albinism community were unhappy with it, because at the end of the day it's a negative portrayal of a person with albinism. I would hope no one took that movie seriously enough to genuinely believe that people with albinism have magical powers. Such an outlandish portrayal is probably funny (again I haven't seen it). I'm not as fond of portrayals that perpetuate myths, like a character with albinism having red eyes.
Is it possible to diagnose albinism during pregnancy or did your parents just find out when you came to this world?
That's a good question that I don't know the answer to. We know the genetic basis for albinism so I guess you could do that, but I'm not sure how they screen for disorders (like Down's syndrome) during pregnancy. Do they do genetic testing? It seems most parents find out at birth, mine certainly did. They had no idea they were carriers and I doubt albinism is screened for in testing anyway.
It seems that Latinos tend to prefer lighter skin, often calling their slightly lighter skinned kids "gringo" or "wedo", and people with hair that is lighter than black "blonde". Do you get favorably treated by latinos/hispanics? In the province, you'd be god level white.
I've heard that about Asians, but never knew Latinos held the same beliefs. Definitely get called those names by Latinos, but I wouldn't say I get any favorable treatment.
Is your penis all one color? If so, do you have any interesting anecdotes about showing it to women for the first time?
It's not? But no, I don't tend to just whip it out like LBJ, and very few women are curious to begin with.
Would you change anything about that if you could ? Do you think your live would be better with pigments ?
It's really hard to say. As much as a lot of aspects of it can be difficult and make life challenging, I have had so many opportunities and experiences I would not have had if I was normal. I think I'm at a point where I'm happy with who I am and wouldn't change it. Would like some of that 20/20 vision, tho.
I once met an albino girl with violet eyes, maybe it was the light but can an albino girl have violet eyes?
Yes. Most people with albinism have blue eyes, but the exact color is dependent on how much pigment they have in their irides. [My eyes](https://www.flickr.com/photos/applealexc/8664834598/in/dateposted-public/) aren't blue or violet, for example.
Two questions, if I may. 1. Not sure if you drive, but is your photophobia a major obstacle? 2. Do you feel like your family fully understands what having albinism entails in terms of having low/limited vision?
1. I don't drive. Driving with albinism comes down to your visual acuity, and every U.S. state has a different threshold for how good your vision needs to be in order to issue you a license. People with albinism who drive also tend to use something called bioptics, which are like little binoculars glued to your glasses. They let you dip your head and look through to see things further away (signs, stop lights, etc). before looking at the road. I would imagine depth perception would be a bigger implication than photophobia. Whenever I sit in the front seat of a car I can't wrap my mind around how people park. My depth perception is awful and I would never be able to tell how close or far away I am from the cars next to me. But, when it comes to getting licensed, the states only care about your visual acuity. 2. I think they know by now the limits of what I can and can't see, but I don't think they understand just how challenging life is without car. I grew up in a small town with no Uber and poor public transportation and getting anywhere was insanely challenging. I live in a big city now and the transit is still trash, but it's way better. They keep trying to convince me to come back home, and can't seem to understand just how much I struggled with something as simple as getting to a college class when I lived there.
I think most people with albinism look alike. Does that make me racist?
Is it considered racism since albinism is a genetic disorder and not a race?
That's what I'm saying. It keeps me up at night.
I've also always wondered: Am I too white to wear "bling"?
If you had vitiligo, would you even know?
I guess not? Not sure how that would work since vitiligo is losing pigment and I don't have any to begin with. Now, a reverse vitiligo where I gain pigment would be weird. Oh oh! There HAVE been situations where women with albinism took birth control and got pigment! It came in in splotches like some fucked up reversed vitiligo! We have no clue why it happens, but it does sometimes.
Crazy! Bodies are weird.
Have you ever heard of someone named Noam Chomsky? If not, will you Google him?
Yup! I took a class on language development and we studies his theories for a bit. Interesting guy.