I have albinism—AmA

Is there anything you wish was common knowledge among the general public about Albinism?

I wish everyone knew about the visual impairment aspect. They can deduce the easy sunburning but likely assume I have perfect vision. The amount of "it's over there," or "it's in aisle seven," or cashiers just waving without saying anything.

My partner has albinism and the vision impairment was something that took a while to understand the extent of even after dating for a good while. I've learned to anticipate where it's a problem and help where possible but even 20 years later it's sometimes difficult to understand the combo of lighting & nystagmus as someone with bad but correctable vision. I wish there were corrective options that helped more.

It definitely takes some getting used to, and it’s hard because even small things like opening a window shade for more light or moving the mailbox keys can be easy for you but problematic for your partner. It’s also stuff you don’t think about like if you go to a party with a buffet setup: Where are the plates? Forks? Where’s the bin? You can walk into a room and identify all those things easily but I can’t! But I’m sure your partner would say you’re doing a great job :)

As a non-albino with congenital nystagmus, it's a pain in the ass alone. I cannot imagine pairing light sensitivity, or any other impairment, with it!

Can you still see 3D effects? People with albinism have awful depth perception because our optic nerves are misrouted, so I can’t see like 3D effects. Which sucks because I really want a 3DS. I bet I also wouldn’t be able to use VR stuff like Oculus.

Is getting glasses or contacts different with albinism?

It’s the same in that we go to the eye doctor and get a prescription and such but different in that they probably won’t help. Glasses and contacts fix nearsightedness and farsightedness which are issues with the cornea in the front of your eye (which is also how LASIK works, it just reshapes the cornea). In albinism the issues are in the back of the eye, so changing the way light hits the retina won’t change a broken retina. Glasses and contacts do help to some degree, like for me they make the world a bit sharper, but they won’t get us to 20/20 vision or anywhere close to it.

How well can your vision be corrected? With ocular albinism w/ glasses to correct nearsidedness I can get to 20/40 in one eye and 20/50 in the other.

People always say "oh that's not so bad, I'm worse than that"....except they don't realize that while theirs can be fully fixed, that's as good as I will ever be.

I recognize that's remarkably good for someone with albinism but still frustrating that it's not fixable and is enough to cause difficulties for me.

I'm also terrified of what it will be like as I get older. My dad has already had to have surgery to remove stretched out muscles from around his eyes due to nystagmus.

Others will never understand because for them it’s as easy as just wearing glasses. In my case I can only get to 20/200 with glasses so they’re not very useful, but I can see very well with a monocular. It truly sucks that we’ll never have 20/20 vision but at the same time I’m super grateful to have all this adaptive technology to make my life easier.

So it's vision impairment that can't be helped with corrective lenses? Or it only helps to a degree?

(I was legally blind without lenses before I had LASIK so I know a little bit about how it can suck when you can't see details.)

Only to a degree depending on the person. Like with glasses I go from 20/400 to 20/200 which is basically going from shitty vision to slightly less shitty vision, though still in the threshold of legally blind. The vision issues in albinism are in the back of the eye, so things like glasses and LASIK don’t help since they only fix the front of the eye.

If you could inject a syringe with a CRISPR protein and remove your albinism, would you?

Nah. Albinism has its downsides but I've lived with it for so long and I've been able to have so many great experiences that I would not have otherwise.

What were these great albinism experiences?

We have conferences where people with albinism gather for like four days. Talks, activities, dances, etc.

But, couldn’t you still do that with better vision.

But the conferences are about albinism. What would be the theme if it wasn’t that?

I mean if you were somehow a former albino then I don't see how you couldn't still participate in the existing conferences I doubt they have color swatches at the door to check for people with too much melanin

I doubt they have color swatches at the door to check for people with too much melanin

Actually we do, and we've caught people using whitening creams from South Korea to sneak in.

Fascinating! What prompted that? What were the nonalbino people doing that caused that harsh of a rule?

LOL I'm kidding, people without albinism are allowed to attend, but obviously I would never go if I didn't have it. I guess I could still go if I was cured, but what if I got shunned? Like in the little people community, they used to shun you for not dating a fellow little person.

Even if it improved your vision?

I mean if that was on the table… maybe?

Is that why I never see an albino person driving?

Pretty much. People with albinism can drive, in certain states with certain adaptive technologies. But the vast majority of us do not. And honestly, even if I could, I'd be terrified to.

I worked with a guy with albinism a while ago. He couldn't see shit, like, really REALLY terrible vision.

We lost track of each other and I forgot about him for awhile, then he added me on Facebook and I see this dude is doing motorsport races.

I don't know what the moral of this story is. I'm positive his vision hasn't gotten better but I'm glad to see he's out there living his best life.

Is he hosting or are you telling me this guy who couldn’t see shit is now racing motorbikes?

Is the word 'albino' offensive to you? Is there ever a time it's OK to use it?

Personally, no. I mean, just look at my username! However, some people do find it offensive; therefore I always use “person with albinism” whenever I talk about the condition or others generally. That adds some degree of political correctness to it, but I feel it’s worthwhile to do. In my opinion the only time it’s appropriate to call someone albino is if you know they’re cool with it. But I mean that’s just me, I obviously don’t speak for all people with albinism. I wanted to, but they refused to me crown me as King Albino.

Do you have extra white privalege?

Probably :P Actually I do think about that a lot. Given that I look white and introduce myself as Alex, how many people just assume I’m white? How much privilege and opportunity have I acquired from that?

Haha interesting social experiment. What is your ethnicity? (if you feel comfortable sharing).

Follow up question, if advancements in Biotech from Ai allow you to have the normal melanocyte levels, would you do it?

I’m Hispanic, would naturally have very brown skin if it wasn’t for albinism.

There is actually a medication that caused people with albinism to produce pigmentation. I mean maybe just so I don’t sunburn? It would feel weird to all of a sudden look different, though.

[deleted]

I mean even going by Alex my last name is also on my résumé :P

What kinds of discrimination did you face? The horror stories I’ve read are of people literally being shunned from their communities, people do not associate with them. I’ve been lucky that most everyone from family to complete strangers treat me with respect (usually they’re super curious) and don’t really say anything negative. Though I also don’t try super hard to integrate in that like I don’t wear the hats and cowboy boots and dance at the parties and eat birria and like go all in. LOL my favorite food is hamburgers. It’s definitely interesting walking the line between both cultures.

Yeah I could def see it for the protection against the sun, but seems like it would be a big shift for sure.

If I could voluntarily come on and off the medication, that would make a great movie where I meet someone while on it then get off it and suddenly this person’s partner is completely different!

On a scale of 1 to Ark of the Covenant, how quickly does the sun flay your flesh?

Isn't the Ark of the Covenant some box that holds old tablets? Why would tha... oh, oh I get the joke. Clever. On that scale, let's go with standing on the surface of the sun.

:P It's actually not that bad. I can take like a 15 minute walk in the sun and be okay. Only around the hour mark do I get sunburned, as evidenced by my current sunburn from this weekend.

That's not as bad as I imagined. I burn at a similar rate, myself.

It really depends on what one considers a “sunburn.” Like I don’t classify it as a sunburn unless my skin actually hurts, but sun exposure and still sun exposure and it’s possible that even reddened skin that doesn’t hurt is still damage and a skin cancer risk. I just risk it because applying sunscreen all the time is annoying.

HI Alex! Happy Tuesday. Have you met other people with albinism? Your hair is gorgeous.

Thank you :) I have met many other people with albinism, both chance meetings and at meetups.

Are you pretty fly?

For a while guy?

Seen this? An Australian Skin Cancer awareness song (by AL Bino): https://youtu.be/YbK6ISodSIc

bit NSFW: has some tanned beach bums in cossies & a singing melanoma

I’m upset that this didn’t end with Al Bino stripping off the hoodie and joining them. Like I get the message is to cover up, but you know that dude is rocking some muscles or something.

I also always wondered if I was too white to wear “bling,” and I guess this is my answer.

Does albinism affect your life in any other way besides vision? Has anyone given you a hard time for being “different”?

Does albinism affect your life in any other way besides vision?

Mainly just vision and easy sunburns. You could get into things like social stigma and difficulty navigating our car-centric cities and so on, but those are more as a result of the core issues.

Has anyone given you a hard time for being “different”?

Not really. People with albinism do get bullied and sometimes ostracized in some communities, but I've been very lucky that family and friends have been very supportive.

It's so great that everywhere I look now I see people advocating for better infrastructure

Just not in their backyard.

How much sunscreen do you go through?

Not as much as I should. Maybe one smaller bottle a year? I generally either just stay inside often or go out without sunscreen and regret it later (like right now).

Let's say it's a sunny day, high noon, no clouds, 75 degrees, how long you got before you're burnt?

I define a sunburn as one where your skin actually hurts, and in that case I’d say about an hour, maybe 45 minutes. I do go out for 15 - 20 minute walks without sunscreen and while I don’t feel pain I’m sure that much sun exposure is not good.

What level does the vision impairment associated with Albinism affect you and most people? Does vision deteriorate more rapidly with this condition, or are you affected at birth?

Vision is affected from birth but it relatively stable from that point forward. People with albinism can get the same age-related vision issues like cataracts and macular degeneration, but overall we just start with a bunch of eye issue. Visual impairment varies in people with albinism; there have been documented cases of 20/20 vision, but most people with albinism will be around 20/150 - 20/400 without correction. Some can drive with adaptive assistance, some can't, it just varies.

Do you have nystagmus in addition to the visual impairment? My daughter has nystagmus and constant alternating exotropia (without albinism), and we are good friends with the family of a young boy who has albinism, exotropia, and nystagmus.

Ah, exotropia is a type of strabismus, which is the name I’m more familiar with. I do have nystagmus but not strabismus; overall, it’s pretty typical for people with albinism to have one or the other (or both in some cases). What’s weird to me is that people who have just nystagmus and nothing else tend to have pretty good vision, so that’s not a huge contributor in albinism.

How do dermatologists advise you to watch for signs of skin cancer? I.e., would lesions look much different from patients without albinism?

I’m not 100% sure but I seem to recall that the presentation would be the same, like the lesions and moles would be similar to the general popular. Maybe more reddish, but you would still be able to tell that something was wrong.

What are the best Halloween/Cosplay fancy dress outfits you have been able to do in your life so far? What's next?

I've never integrated my albinism into a Halloween or cosplay outfit, but I'm told that I'd make an excellent Joker and I'm determined to do it at some point.

Pete White from Venture Bros would also be a solid choice!

Is his last name really White? Clever. This would be even easier since I would just need the clothes (and longer hair).

Hi again, Alex, it's great you're doing another AMA.

Would you rather have nipple sized nipples on the ends of your wrists instead of hands, or hand sized hands instead of nipples?

So I can have normal nipples instead of hands, or keep my regular hands and lose nipples? Or do my regular hands go where my nipples currently are?

I’ll take hand sized hands. If I can have them at the ends of my arms that would be great, but I can deal with chest hands. I want chest hands for the high five chest bump combo!

Well on the topic of nipples, are yours the same color as the rest of your skin?

(SORRY not trying to be weird, I promise.)

Looks down shirt Kind of? Serious r/ghostnipples situation over here.

Here we go again. Did you buy a Segway yet?

Whoa whoa whoa when did this transition to buying a Segway? The recurring question was whether I had ever ridden one, and I said no but I would look into if they have like Segway tours which they did but I never booked because I’m lazy and now I moved where they don’t offer them and I regret but we never talked about buying. Are you going to ask me to buy you one next AMA?!

But seriously, never rode one or bought one. I’d be a little scared of going that fast, honestly. My vision ≠ fast reaction times, which you’d kinda need to avoid kids and curbs and stuff while going as speed. It’s why I can’t stand bicyclists and skateboarders who ride on the sidewalk. By the time I register that one is coming at me they’ve already gone past me.

I dunno when, Last time perhaps?

Do it, do it, do it...

I will not succumb to your peer pressure!

…Costco doesn’t sell Segways, only go karts. Fine I’ll check Segway website.

…$999?! I’m in, but only if I can be a mall cop.

In my Derek Zoolander voice

You can read minds?

Only on Thursdays.

RemindMe! 2 days “get mind read”

Not necessary, we both know you’re thinking about Danny DeVito.

What is your deepest darkest secret?

I know why kids love the taste of Cinnamon Toast Crunch?

I was never really a cinnamon toast crunch kid, am i a robot?

Every account on reddit is a bot except you.

Is there anything you wish more people understood about Albinism?

I wish everyone knew about the visual impairment aspect. They can deduce the easy sunburning but likely assume I have perfect vision. The amount of "it's over there," or "it's in aisle seven," or cashiers just waving without saying anything.

Do any of your other relatives have albinism?

I do, two cousins on my mother's side.

Do you find that albinism comes with inherent musical ability?

You're the second person to ask me that, someone else posited that albinism comes with great singing ability (though she was unwilling to sing for me to support her hypothesis). My singing shatters glass and I don't know how to play an instrument, if that tells you anything.

Maybe is because people think of Johnny and Edgar winter?

There's also Yellowman and a bunch of other artists with albinism that I can't remember the names of right now. Oh and Lauren Dawes! Yeah maybe there is something to that idea. I should go learn to play an instrument. Like the guitar! Chicks dig a guy who can play guitar.

My son has an albino friend. We just normally go about our days normally buy his vision is inspired so we often say :” hello Xxx it’s yyy Dad” just to that he can understand who’s talking to him. We also give him from row, like 4 inches from screen when playing minecraft on ps4. Do you have any tips or hints of what the general public could do to make young albinos more comfortable?

Those two actions are already incredible. I can’t count the number of “This is your Uncle Bob, do you remember him? Remember at your cousin’s wedding he had a blue tie?” Like I know this is something many families do, but since I can’t see faces well there’s not a chance in hell I’m going to remember. And yes, getting close to the screen is amazing. God I wish we had today’s giant cheap TVs back when I was a kid. Today’s children with albinism will hear tall tales of playing Halo multiplayer on a 19 inch screen while they play Fornite on a VR headset.

Another key thing (which you probably know by now) is to take them to what they want. Instead of just saying “It’s over there,” “it’s on the shelf,” “he’s in the living room next to grandpa.” Even something like finding a favorite toy in a giant pile may be difficult even if it pops out at you easily. I hate clutter for this reason.

And ask if they need anything. Everyone is different, but personally I was (and to some degree still am) the worst about being an advocate for myself. Because I didn’t want to bother people. So if the teacher was supposed to give me a copy of the PowerPoint slides and forgot I’d just live without them. If my parents chose to sit in the sun not caring about my lack of sunscreen I’d just live with the sunburn. Some of us are awful about communicating our needs, so check in every now and then.

Hey I have a very mild version of albinism called ocular albinism. I'm a 33 year old male. Do you have any advice or products that help your quality of life?

Howdy! That’s a tough question as it’s quite open. I use and highly recommend Apple products for their accessibility. Monoculars are also incredibly helpful but quite expensive and cumbersome to carry around. Get the app Brighter and Bigger, I use it almost daily. Um… move to a city with good public transit if you can, the independence is liberating.

Are you tired of all the Albinism villains in movies and books?

I don't really pay attention to them much, and from what I've heard Hollywood is backing down from the "evil albino" trope, but it is quite annoying. Especially since those depictions perpetuate the red eyes myth.

What happens when an albino person takes melanotan 2?

Melanotan 2 is the drug that makes your body produce more melanin. And it does effect melanin in the retina so I’m curious about the skin and the retina aspects if you have knowledge.

Excellent question, here's the response I got when I asked: "Melanotan is an imitator (analog) not of melanin, but of one of the hormones that stimulates melanin production. No publications have been listed that report its us in albinism. However, it may be reasonable to study this possibility at some point. It would only work in cases where stimulating the melanocyte could result in greater pigment production. Therefore, it would be unlikely to work in a person with OCA-1A."

Granted that was 10 years ago, but to my knowledge there still haven't been studies done. It's complicated because the general public assumes that people with albinism just can't make pigment, and I perpetuate that as well since it streamlines explaining that disorder. But in reality each type of albinism has a different genetic (and therefore physiological) cause. In some cases the body can't produce melanin at all. In other cases it can produce melanin but it can't get it to where it needs to be, or the body destroys one of the precursors and if you stop that then they can produce melanin just fine. In one type the pH level is too high and so melanin can't synthesize properly. It's absolutely fascinating but absolutely complicated.

Do you see better in the dark?

LOL yes and no. I mean my visual acuity is still shit regardless but I do find that I see better in the dark just because I’m photosensitive and there’s no sun or bright lights when it’s dark. So I can see things like the crosswalk indicator and bus route signs and such better than during the day.

I know albinism doesn't affect your intelligence, but I can't help noticing how smart you seem to be about a great range of topics. It surprises me because of the visual impairments. You also seem to be doing just fine with a keyboard.

Do you read a lot?

Aww, thank you! Yeah, when I was in high school I wasn’t very popular so I’d just stay home and read a bunch. Wikipedia articles, books, the news every day, watch documentaries, etc. And then in college I was constantly reading research articles. You know what they say, knowledge is power!

I know that with people with red hair there is an unknown reason why more anaesthesia is needed for surgery. Is there a similar requirement for albinos?

Not that I’m aware of. I’ve had to undergo general anesthesia twice and both times went well, I didn’t wake up mid-procedure or anything.

What are some common misconceptions relating to albinism and how can we work to dispel those myths?

The only one I can think of off the top of my head is that we have red eyes, and I’ve even had someone tell me I’m not actually albino because I don’t have red eyes. Not sure what we can do about it, though, beyond changing depictions in the media maybe? I’m trying to do my part with these AmAs!

Which of the planets is closest to earth?

Isn't it Venus and Mars? Unless Pluto is on some wacky trajectory which makes it super close to earth right now. But wait Pluto isn't a planet anymore.

It's actually The Sun -> Mercury -> Venus -> Earth -> Mars.

If the sun can be a planet then so can Pluto. I’m calling Neil deGrasse Tyson about this.

Aside from vision, have you looked much into other potential health issues related to albinism?

The reason I ask is that I had an albino friend that passed away last month. Early 30s, probably the most physically fit guy I ever knew, just went to bed one night and didn't wake up the next morning. I'm not sure if they found out for sure what did it, but I know that albinism can be linked to heart/lung issues...

That being said, I'm sure you know more about your condition than I ever will, and I hope you take care of yourself and live a long, happy, healthy life! :D

How tragic, I’m so sorry for your loss. It’s especially heartbreaking when it’s sudden. While I don’t know of any links between albinism and other health issues, there is an exceedingly rare genetic disorder called Hermansky-Pudlak syndrome. It combined albinism and a bleeding disorder, as well as Chron’s disease and/or pulmonary fibrosis in some subtypes. I’ve tested negative for HPS, thankfully.

How severe is your vision personally impaired? Like, strong glasses-level or legal blindness-level or somewhere in between? I never thought of that aspect of albinism but it makes sense

It’s really hard to explain (obviously), but to your examples I am legally blind and even the strongest correction doesn’t help. The easiest (though perhaps not best) analogy is 240p v 1080p. A 1080p video is sharp, you can see all kinds of fine details, read signs, see facial expressions, etc. A 240p video lacks a ton of finer detail and everything looks like giant blobs. I mean you can still pick out like cars, tress, buildings, humans, etc. You can tell what those things are but you can’t really see any fine details, reading small text is out of the question, etc. Everyone else may have 480p or 720p vision correctible to 1080p with glasses. I have 240p vision and there’s nothing I can do about it. There’s also the photosensitivity and lack of stereoacuity (poor depth perception, can’t see 3D effects) that contribute, but at its core that’d what my vision is like.

This video is phenomenal and has great examples, but I understand most people don’t want to sit through an hour long video just to get the answer to their question.

If you were a Sherwin Williams paint color, what color would you be?

Can I be eggshell white?

Thanks for the AmA! Is this something you find yourself constantly having to explain to people or do they generally not pay much attention?

They generally don't pay attention. I mean they stare, I'm told everyone stares in public, but people pretty much never ask about it or make a comment on it.

Were you picked on or anything growing up because of your albinism?

Not really. I’m sure there were a few kids to wanted to be smartasses, but for the most part most of my peers accepted me and liked me.

Hi Alex. In the 70s, I attended a YMCA summer camp for a few years and there was a very popular councilor named Mayo. I think his actual name might have been Keith, but when he was in the school, kids called him Mayo due to his hair color resembling mayonnaise.

Question is: this guy had somehow embraced his uniqueness, turned it into positive attributes. Do most people with albinism feel they are outcasts, and this one person’s situation is unique?

I think it mainly has to do with their upbringing. I have a friend who I think is in her like 50’s (I wouldn’t dare ask) and she hated being referred to as a person with a visual impairment or being reminded that she has albinism, even from me! Like a fellow albino but she was just not comfortable with it. We talked about it in detail once and she explained that she just came from a different time where having albinism made you an outcast and it was something she got teased about. There’s a story about walking home from school and some guy going “Lenore! Come quick! There’s an albino outside!”

I wasn’t really teased or bullied so I’m super open about it. Do AmAs, make jokes, I just posted myself to r/RoastMe, my nickname in college was Q-tip, yeah I totally embrace it. But not everyone does and often it’s because they weren’t accepted for being different.

No questions, I have known 2 different people with albanism in my life. One of them was black (as in, African heritage, obviously their skin was quite pink).

Wish you well! Hopefully you're able to satisfy the curiosity of people who've never encountered albanism before.

Oh, maybe one question: did the depiction of the Albino in The Divinci Code (or really any Hollywood depiction of a person with Albanism) bother you as much as it did me for it's total lack of accuracy?

It didn’t like bother me to the point that I’d go up in arms and rant about it online, but the evil albino trope has really gotten old and just perpetuates stereotypes for the general public. Thankfully Hollywood seems to be moving away from it.

What's your favorite episode of Firefly?

I’ve never seen the show. I kind of want to but I’m afraid of being disappointed since I know there’s no season 2. Same with like Santa Clarita Diet and Mindhunter. Everyone complains about how the shows abruptly ended so why bother watching them when you know you’re going to be left with a cliffhanger or not have a satisfying ending?

How your vision or approach towards life is different than normal skin people's?(I mean your personal thoughts on being albino)

Good question. It’s a hard one to answer because on the surface I have the same outlook as everyone else. The fact that I have albinism isn’t always in the back of my mind, and I’m not really conscious of the fact that I stick out whenever I walk into a room. I’m just me.

But then there’s things like I hate cars and how car-centric cities are, and wish we embraced public transit and walkability. I’m not sure if I would feel as strongly about these things if I could drive. As most people who I meet love their cars, the freedom that having a car gives them, and would rather die than take a bus.

Whats the most frustrating or pleasing thing about the portrayal of albinism in media in your experience?

I don’t really pay attention to albinism in media but it is frustrating whenever they have a character with red eyes, magical powers, or just make them plain evil. That trope needs to die.

ABC’s What Would You Do? did a segment on public bullying with a person with albinism and that was nice, as well as the MTV True Life episode on albinism, but that was like 10 years ago at this point.

I don't have albinism, just dark hair and extremely pale skin, and I was made fun of constantly growing up. I was called things like "ghost" and "albino" (said as if that word was bad), so I can't even imagine how much worse it can be for people with albinism.

Anyway, I don't know what you do for work or if you feel comfortable sharing that, but based on your answers here you are really funny and engaging. Have you ever thought about writing a book based on your experiences?

You had dark hair and pale skin and they didn’t call you a goth? Lame. Did they at least call you a vampire? Or was Twilight not popular by then? LOL who sees that and thinks ghost and albino as insults. Morons.

I’ll turn these AmAs into a book and then we can all be famous! It would be like an extended Buzzfeed article :P Truly, I don’t really have anything from my life that I think would be book-worthy. No harrowing tales of bullying or cultural conflicts or crazy love stories. But I’m definitely happy I can do AmAs every now and then and answer everyone’s burning questions (and try out my dry sense of humor).

Do you write in white font?

I do, actually, but with a black background.

Hello! I believe I've read an AMA of yours in the past. Have you ever photoshopped yourself to see what you'd look like with melanin? What hair color do you think you would've had? Do you have kids (with albinism?)?

(Brb gonna Photoshop myself to see what Id look like with albinism.)

Have you ever photoshopped yourself to see what you'd look like with melanin?

I wish my photoshop skills were that good. Someone in an earlier AMA did photoshop what I would look like with black hair. It was one of the earliest ones like nine years ago and I’m way too lazy to go find it, but it has been done. You definitely have permission to play around with photos in Photoshop if you want.

What hair color do you think you would've had?

If I didn’t have albinism I’d most likely have black hair.

Do you have kids (with albinism?)?

No kids. Kids are expensive!

I hope you’re still responding on this thread. I have two amazing kids with albinism! What is one thing you wish your parents would have known/understood about albinism and what’s something they were awesome at!? I’m always worried there is something for my kids I’m missing. Thanks for doing this!

Questions have slowed down a bit but yeah I’m still here :)

They were really awesome about being involved with school and medical appointments. Every single IEP meeting, every single adaptive technology session, taking me super far away to low vision specialists, glasses, they were always on top of things.

On the flip side they were (and to some degree still are) pretty bad about remembering that I sunburn easily, somehow. We can go to a restaurant and they’ll choose a booth a in the sunshine, or we’ll go out running errands in the car and they’d just leave me in the car in the sun. Or we’re spontaneously going to the park for whatever reason but I don’t have sunscreen and can’t just chill in the sun like they can. Nowadays I just carry sunscreen with me whenever, but I feel like as a parent you always have to keep in mind “Okay how can we minimize our child’s sun exposure while doing XYZ.” They never really seemed to think about it.

They also weren’t super great about independence. And I mean I can understand where that comes from. Supposedly when I was a very small child I refused to leave my mother’s side, even when she would use the restroom. I remember when I was 12 and we’d go to Walmart I would just stick with my family as opposed to roaming the store on my own and catching up with them later. So when I got older and started wanting to walk into town alone or travel they were not having it. Absolutely refused to let me travel alone. Many people with albinism absolutely crave independence, in part because we often have to be dependent on others for so much. I can understand that it can be hard to let go and you worry, but you have to.

I encourage you to come over to r/Albinism and ask the same question, as I’m kind of curious what others would say. That’s all I can think of off the top of my head, for sure independence was a huge thing for me, and I think even to this day my parents don’t understand just how much of a struggle it is not being able to drive. I don’t think they realize how car-centric much of this country is and how challenging it is can be to get around without one, but that’s my reality.

How did your life change over time with the thinning of the ozone layer, higher uv?

It’s been the same, just stay inside or use sunscreen. Thankfully sunscreen continues to be effective as long as you apply it as directed.

Are your eyes more susceptible to sunlight? How do you handle sunny days, are sunglasses enough?

I’m definitely photosensitive. Not as badly as other people with albinism, like I can tolerate more bright light than others I’ve talked, but it’s still annoying. For a sunny day generally sunglasses are enough. Though I never wear them because they make the world a weird shade of brown, reduce visual acuity, and I can’t see my phone with them on, so I just squint.

My optometrist says my eyes have a blonde fundus (little to no pigment) which is most common in Albinos.

Is this something you've ever encountered or possibly have a moderate sensitivity to light?

I've always been curious. Best wishes and thanks in advance.

Interesting, I wonder what would cause that beyond albinism. That is indeed a hallmark of albinism but we also don’t have pigment in our irides which also contributes to the photosensitivity.

Thanks for doing this AMA Alex. If you don’t mind me asking, what’s your ethnicity?

No problem, I'm Hispanic.

Foul you kno anything about “retinal albinism”? That is the latest diagnosis I have (third retinologist in 20 years). I’ve had a mild vision impairment fo most of my adult life, with multiple different diagnoses. I am told that it is steady state and does not get worse.

I do not have albinism, but My dad have unusually fair skin compared to my family (who are olive-skinned Sicilian descent)

There is something called “ocular albinism” where you have visual impairment and generally the hallmarks of albinism, but relatively normal skin and hair pigmentation. I mean the skin may be a bit lighter than your family, but overall skin and hair won’t be white like mine. Ocular albinism is an X-linked trait so it’s very common in boys and uncommon in girls. Well I mean it’s albinism so it’s still super rare compared to the general population but there’s a gender imbalance as well.

Beyond that it may be something else. Albinism has very distinct hallmarks like foveal hypoplasia and iris transillumination and nystagmus and reduced stereoacuity and misrouting of the optic nerves and things that are super easy to identify if you know what you’re looking for. Sadly, if an eye doctor doesn’t have much experience with people with albinism they may not know what to look for. I have heard of it referred to as an “albino retina,” but that’d more of a descriptor than a diagnosis.

Hey dude! What are your thoughts regarding albinism depicted in media ala Pete White from Venture Bros?

I never went out of my way to watch them, but I never really cared as long as they were accurate. It’s characters that are evil or have red eyes or magical powers or some other stereotype that are annoying.

Any surprising pluses socially or physically gained from being Albino?

When we inevitably go to war with Russia, I’ll be drafted into the military and on the front lines in Alaska. I’ll easily blend in with the snow, the Russians won’t suspect a thing. I’ll be a shitty shot, though.

:P I can’t think of any surprising benefits in either category. Like socially it’s not an issue but it’s also not like people flock to me because of it. I guess physically I’m a blank canvas for some amazing tattoos.

Hello Alex, my question for you is how has albinism affected your social life? Do you have a significant other?

I would say the effect is neutral. I don’t have people flocking to me because of it but I also haven’t had trouble making friends. It can be an issue if, say, people want to meet up at the arcade on the other side of town. Well that sounds like fun but I have no way of getting there, or public transit only runs every 30 minutes so I have to choose between being super early or super late.

Reminds me of another visually impaired friend I had, we lived 30 minutes apart and our only options for seeing each other were expensive Ubers. Sometimes we’d meet in the middle, sometimes it was restaurants close to one another’s homes, it depends.

Heymate, I suffer from ocular albinism which you must know about, I'm pretty blond, but not as white as you, my vision acuity is 0.1/2.0 so I can sympathize with your pain to some extent. My social skills and ability to read the room are very low because of this , I sometimes wonder whether it would be good if I was born with pure white body like normal albinos and whether that would help or not? It's a tough thing to think about but I still do it. Life is a heavy challenge for both of us, it would be nice to chat about it to be honest. As for questions, how do you advise people with low vision to date people?

Hey mate, yeah the visual cues and body language are rough. I bet this is what people with autism feel like. From small things like recognizing someone waving to you from across the room to recognizing body language and subtle cues when speaking to someone. I hate it. For much of my life my friendships were online so I’m good in that regard, but in person… oooof, it’s bad. I’m just so socially awkward.

For the dating part, we had a recent thread in r/Albinism about it. Feel free to come chill there anytime, people with ocular albinism are welcome. For dating you just have to put yourself out there. Start online since it’s easier than approaching people in-person, and at some point you’ll just have to explain what albinism is and how it affects your vision. If they’re supportive then it’ll be fine and if not then you know not to waste your time with them. I feel like online dating is a good equalizer in this regard since it can help get past people being so focused on looks.

And yeah we can chat about this or anything else anytime. I don’t use the actual Reddit chat function but you can send me a direct / private message anytime, would love to exchange tips on navigating social situations (I find that alcohol helps, but it also makes my nystagmus worse).

Sorry if this is a dumb question...

You mentioned there are different types of albinism (and that some albinos have normal hair and skin pigmentation).

Are there varying degrees of lacking pigmentation within that? Or is it just either zero pigmentation or a normal amount with no in-between?

Pigmentation definitely varies in albinism. The typical presentation you imagine of pale skin and snow white hair is really only true of OCA type 1A, in which individuals produce zero pigmentation. All other types produce some pigmentation, which may result in moles that darken in the sun, darker hair, stuff like that. The variance in presentation means it’s impossible to tell what type you have from appearance alone.

Do you have perfect pitch?

My mind went immediately to baseball and I was like “I couldn’t even hit the ball when it was on a tee, you think I can pitch?” But I’m assuming you’re asking about like singing?

I suspect having a disability of any kind would cause feelings of isolation and challenge. Do you/did you find it difficult to live a reasonably normal life with albinism despite to some extent being reliant on the support of others? How has it impacted your career choices and career growth? For young kids with albinism that don't have a reasonably solid support network, what tips would you give them?

Excellent questions!

Do you/did you find it difficult to live a reasonably normal life with albinism despite to some extent being reliant on the support of others?

With advances in technology and some creativity, I’m able to live independently and do most things independently. The toughest nut to crack is transportation. Not being able to drive in such a car-centric world means relying on family, friends, Uber drivers, etc. Public transit is awful in much of the country.

How has it impacted your career choices and career growth?

I definitely had to give up some dream careers like pilot, firefighter, astronaut, professional hitman. However, people with albinism can take on a wide range of careers. Teaching, computer programming, research, administration, counseling, etc. Believe it or not there are even medical doctors and nurses with albinism.

For young kids with albinism that don't have a reasonably solid support network, what tips would you give them?

There are monthly online meetups for children and teens with albinism. It’s not the same as having a friend local, but connecting with another person with albinism (even virtually) means so much. Also recognizing that social supports matter just as much as academic accommodations, and trying to foster independence as much as possible.

Which is a better euphemism for vagina: Panty Bacon or Queef Jerky?

Queef bacon.

[deleted]

Rit dye. I know it's for clothes but it works so well on hair!

I'm assuming this is a joke, but your answer to the cosplay question got me thinking.

Does your hair take dye normally? I expect you get to skip the bleaching step that very dark-haired* peeps have to go through.

*I've never dyed my hair, but both my children have. We're all rather dark-haired.

Personally I’ve never dyed my hair, but I’ve done many AmAs over the last 10 years and this comes up frequently. The consensus is that bleaching is not necessary, hair dye does stick normally, and it may fade a little faster compared to everyone else. But it really depends on the type and quality of hair dye. I’ve always wanted to try dying my hair but just never got around to it. Ideally, we’d want to cut off a lock, dye it, and see what happens before going all in.

Wait, are you serious? What's this about hair dye?

LOL no it’s a joke answer, because there are two ways to interpret that question. It could be “What hair dye are you using right now?” and the answer is none because this is my natural hair color. They could have also been trying to ask “What hair dye to you normally use?” which just makes the assumption that I regularly dye my hair. I don’t, so the answer is still none.