Apr 15th 2017 by AlbinoAlex • 77 Questions • 2175 Points
do people date you because of your albinism (finding you different than others or 'cool') and have people you've dated been scared that your children would have a chance of being albino too?
Not that I'm aware of. I don't recall that ever coming up when I dated people without albinism but I've dated a few people with albinism and it's certainly something we thought about—but more the question of "Would you want to have a child with albinism?" The actual genetics behind it are pretty straightforward.
What's the most common misconception about your condition that people get wrong?
That all people with albinism have red eyes. Most people with albinism have blue eyes. Maybe a hint of violet, but not red.
Do either or both your parents have albinism or are they just carriers?
When did they find out you would have albinism?
During pregnancy, at birth, or is it something you can't tell right at birth?
Do you have relatives who have albinism?
I never actually asked about the first months so I don't know. I remember them once saying they were surprised and I doubt they knew in advance that I would have albinism or what albinism even was.
I'm not sure if you can tell during pregnancy now a days, but you can definitely tell something is off during birth. Doctors could easily make an on-the-fly diagnosis of albinism but I'd personally wait for a genetic or ophthalmic consult before accepting it.
I have two cousins with albinism on my mother's side.
If I have children with someone who doesn't have albinism, the chances are 50% if the person carries the gene for albinism, and 0% if they do not carry the gene for albinism.
If I have children with someone who does have albinism, the chances are 100% (Yes, 100%) if we both have the SAME TYPE of albinism, and 0% if we have different types of albinism (however, the children would be carriers for both types of albinism).
If your partner didn't outwardly show signs of albinism would you want to go through genetic tests to see how likely it is your children inherit your albinism?
If you are only a carrier you wouldn't show any outward signs. There's a 50% chance that one or more of my siblings are carriers, we'll probably never know if/which one. If they had albinism, it'd be pretty easy to diagnose. There's a wide range in presentation (e.g. pigmentation) but there's no hiding the eye problems.
With that said, genetic testing would be up to my partner, but I would not pressure them to do so. I already have my genetic testing, so it would be up to them if they'd like to as well.
Terrible. 20/400 uncorrected and around 20/150 or so with the best possible correction. Good enough to get around independently but still too terrible to, say, see the board in class or watch TV without having to get super close.
Yes, tremendously so. But you have to be sure to apply it thoroughly and in a timely manner (every two hours usually).
My husband recently left his in overnight and ended up with an ulcer on his eye. Never forget!
I wonder how many people do forget, just like people forget that they have glasses or a watch on. These things become so natural to us that we forget they're even there!
My aunt used to leave them for a week...
... she's stupid.
What other things did she do?
Regular contact-wearer here. I sleep in mine every night, change em once a month. I usually don't even notice they're in, and if they do start to bug me I pop em out and clean em.
Every eye doc will tell you something different about sleeping in your contacts. Most say it's bad for you, but I've also met quite a few who say it's fine (or at least, that I'm fine...maybe some people's eyes are just different)
I started by taking them out every night, but I'd go spend nights with my friends and forget to bring contact stuff. When I woke up, it'd be kinda unpleasant but not seriously irritating. Over time, it became less and less of an issue, and now my eyes don't care
Thanks for the feedback! Would you say there are any more benefits to contacts besides convenience? It's like, I have AirPods, and people ask me all the time if they're worth it. The sound quality is the same as EarPods, I just paid $160 to not have to deal with wires. In the same vein, do contacts just eliminate the need to deal with glasses?
My wife is almost blind and she can easily take her contacts in and out.
There's also pendular nystagmus, it's this rapid involuntary eye movement that people with albinism have. Outwardly, it appears that we're scanning the room but in reality we're staring right at you. I can't imagine the hell of trying to get my eyes steady enough to put in contacts :P
But concerns aside, I'm definitely open to trying them one day.
You are probably an expert in sunscreen, which brand do you recomend for somone like me who sweats like a pig after using it.
I'm not, actually. r/skincareaddiction is where I went to get sunscreen advice. The FDA banned advertising sunscreens as "sweat proof" or "water proof" in 2011, best they can do now is water resistant for 40 - 80 minutes. I'd lean towards something meant for sports, but otherwise constant sweating just means constant applications. Though, the worse part is when it gets into your eyes :(
They are a thing, held every two years in the United States, Australia, and England. I've been to three but I last went in 2014.
It's fucking awful, makes you really really appreciate living in the States.
Based on your name in the proof, it seems like you're probably Hispanic. Did anyone in your family have any suspicions of infidelity when you came out shockingly light-skinned/haired? Does anyone ever question your ethnicity as a result?
From what I remember, everyone was shocked, but no one suspected or accused anyone of infidelity. I was clinically diagnosed by geneticists at about four months old, who made it clear that it was genetic and not infidelity.
Everyone just assumes I'm another white guy. I speak flawless, unaccented English and introduce myself as Alex. It's only when I disclose that I'm Hispanic or just start speaking Spanish that they find out (and sometimes freak out).
What are the health consequences of albinism? Thanks in advance!
Lack of natural protection from the sun due to lack of pigmentation, and quite profound visual impairment. That's about it for OCA.
How tough was school? Kids are cruel and mean as fuck. Were there any you just knew you couldn't be anywhere near?
It actually wasn't too bad. I grew up in a small town and with all my classmates. When middle school and high school came around and popularity really started to matter, everyone was just used to be at that point. I was nowhere near popular, but also seldom bullied.
Did you ever think about dying your hair? I'd ask if you ever tried to get a tan, but I don't think that's a good idea.
I've always wanted to, but I've never gotten around to it. I also wanted to do a cool colour like blue but my workplace prohibits unnatural hair colours.
"My workplace prohibits it"
Whats your work.
oh so your school prohibits it?
"no my work."
Oh shit, I just noticed that! Well I mean, I guess it encourages people to read through the entire AmA!
prohibits unnatural hair colours.
I feel honestly a bit bad but I couldn't help but find this a little funny.. I mean, I kinda find it asinine for workplaces to mandate that much of their employees, but moreso it's funny because like..
Okay, so, they don't want blue hair because why? It's "unprofessional"? It "looks weird" or different from the norm? I guess that means they probably only hire people of different skin colors because they can't use that against you?
It is definitely weird that companies do that. I mean it could potentially be justified if you work with the public but... look at Apple! Weird hair colours, tattoos, piercings. They don't care, just be you!
With your visual impairment are you able to drive? If not, how do you get around?
Not legally in either state that I've lived in. Luckily. public transit is pretty decent here. Slow and infrequent, but available. I also use Uber to get places where public transit doesn't go or if it's shut down.
I can get pretty much anywhere, on time if I set out early enough. The only issue is being on someone else's schedule. I can't get off work and just drive home, I have to wait for the train and then again for the bus. Those transfers can take ages if it's not rush hour.
Do you have sunscreen on every time you go out at summer? I quess you have similar relationship with sun as me. BTW I really like your hairs. I have vitiligo and one patch is on back side of my hair so I have brown hairs with circle of white hairs.
Usually only if it's like an outdoor festival or the beach. For casual walks to the supermarket or call, I just walk really quickly. I can usually make it in about 15 minutes or so, so not worth the time it would take to apply sunscreen that protects you for two hours.
Sunburns take about an hour or so of direct, continuous sun exposure. But when they do happen, they definitely hurt!
No, though there's still debate as to whether or not the colour would stick due to the lack of pigmentation.
Were you that albino kid I knew who used to push the other kids off the swings in third grade? If so, why did you do that?
Because those were my swings! Bitches think they can just roll up and swing anytime. Hell no!
Anything you would have wanted from a teacher when you were younger? (I'm a teacher and I have a 5th grader with albinism trying to see if you have any ideas that could help :)
I wish they would have checked in more to see if I needed anything. We've noticed that lots of children with albinism are terrible at being advocates for their own needs. If my teacher forgot to give me a copy of the PowerPoint slides or didn't obtain a large print handout, I'd just live with it. Why? I don't want to bother them. I know that sounds incredibly silly, but it's very common. It's not really their fault, teachers have a ton going on and can easily forget about that one student out of 120 that needs that one special thing. But if the teacher forgets and the student doesn't speak up...
Though ultimately, I was mainly limited by just a lack of visual aids. I have several monoculars now and they're a godsend. I can see the board in class, I can see the crosswalk indicator, I can read signs and see finer details. I didn't get one until college, but it would have made K-12 so much easier, for both myself and my teachers. This stuff is expensive, and you need to seek out someone specializing in working with people with visual impairments to find the right solutions. Some kids prefer large print, some prefer magnifiers, some prefer CCTVs. It would be nice if every child with albinism could easily be given access to the tools they needed to succeed, but they can be hard to obtain if you don't live in a big city, and it's not a problem a teacher can easily solve by themselves.
My family has this weird pigmentation issue where our knees and legs and a very little patch of white hair in the head where we are lacking any pigment. My family has never ever given any importance to the matter but I am the most affected of us since my belly is affected as well. I and the doctors I recently visited suspect piebaldism.
The thing is my girlfriend and I are starting to think in all seriousness about being parents and I am worried of the implications of getting bigger albino patches and them reaching eyes and ears. You perfectly estated the problems in this thread.
Would you ever consider going through some kind of treatment or process to make sure your descendance would not (i would not like to use suffer but my english is limited) suffer from your condition? Im actually weighting this very very seriously.
I've never heard of the condition before but it's downright fascinating! The contrast seems to be that I have melanocytes but they don't function properly, whereas patients with piebaldism are lacking melanocytes altogether! I wonder if they use similar mechanisms...
I wouldn't worry about it spreading to your eyes and ears. The melanocytes in your ears play no role in normal hearing. This has been verified by hearing tests in 100+ patients with albinism, all normal. We don't know why there are melanocytes in the inner ear, but they don't play a role in the actual audition process. Similarly, losing pigment in your eyes would, at worst, probably just make your photosensitive. For albinism, it's the lack of pigment that led to abnormal development, rather than normal development being screwed over by the removal of pigment. We still don't understand the true mechanisms behind pigment and vision, but I wouldn't worry too much.
It seems like what you're asking about is a form of gene therapy. I personally am not seeking a cure for my own albinism and would not take one if it existed. But to treat, say, an unborn child with it... I don't think I would do it, but it's up to each individual person. Like I said in another response, we finally have the means to edit DNA. Whether or not we should do it on humans remains a very controversial ethical battle, with good arguments on both sides.
What's the most ridiculous question you've gotten related to you being albino?
I once had an ex ask me if I could see myself in the mirror. This was back when Twilight was incredibly popular.
It's not a question per se, but I have had someone tell me I didn't have albinism because I didn't have red eyes. I also had a doctor who refused to believe I had albinism and wouldn't buy it unless I showed him proof.
What's your favorite and least favorite thing about albinism?
Favourite: Being incredibly unique, and getting to have lots of awesome experiences because of it—like these AmAs.
Least favourite: Definitely the visual impairment. A lot of it can be overcome with the right tools, but at the end of the day I'll never be able to see exactly what other people see.
- Do you think your situation is maybe helping you or harming you in social and professional activities? I mean do you think that maybe people like you or dislike you just on the fact you have albinism.
- Also when you were in school did you have problems with other children?
- And lastly - if there was a way not to have this condition (albinism) anymore (like some kind of cure) would you be for it or agains it?
That's a really interesting question. I think it would only harm in social activities if people did not understand that the visual impairment makes it very difficult to pick up on social cues. Someone could wave to me from down the hall and I probably wouldn't see them. Those unaware of the visual impairment might think "He's ignoring me, what an ass!" For professional settings, it's usually something I prefer to disclose immediately to avoid problems. I mean people can be pretty bigoted, but I highly doubt there have been many people who just straight up disliked me for having albinism, especially adults. There are some people here pissed that I keep doing AmAs, but that's straying from the original question.
Not really. I grew up in a small town along with my classmates from pre-K to high school. The kids I played in the sandbox with were the same kids I sat next to at my graduation. So by the time middle school and high school hit and popularity started to matter, everyone was used to be. I wasn't popular by any means, but seldom bullied.
So at present there is no cure for albinism, but they've tested a few drugs trying to improve vision in patients with albinism. I debated for a very long time whether or not to participate in those trials. I don't want a cure, and if one existed I wouldn't take it. But I think we should look for one, because there are plenty of people with albinism who are unhappy with the condition. It usually stems from bullying, but I know several who refuse to even talk about it, hate it when others figure out they have albinism, and try their hardest to conceal it. For these individuals, a treatment would be life changing in more ways than one. I participated in the drug trial to help us get closer to one day having a cure. Not for me, but for them.
Do you feel obligated to mate with the darkest person you can to even your gene pool out a little?
I mean, if someone was willing to volunteer as tribute...
It's hard to say. Maybe pose the question over at r/askhistorians?
Do you find that people look at you all the time and does this cause you to suffer with low self esteem or depression?
BTW l am morbidly obese and this causes me depression and low self esteem.
The beauty of being visually impaired is that I can't actually see people staring. I literally can't make out their facial expressions from a distance, what they're looking at or what emotion they may be displaying. I know it happens, when I'm walking around with other people they point out that everyone stares, but I personally cannot and therefore do not notice it.
But even if I did... I'd take it as a curiosity thing. Imagine if you saw Britney and Abbey Hensel walking down the road. You'd stare. But not in a "OMG what freaks!" kind of way. More in the sense of... fascination. Little kids especially, they very obviously stare. But that's probably because they've never seen anyone with albinism before.
Never, I'd probably miss anyway.
is the skin in your crotch area still darker than the rest like normal people?
I just invert the colours on my iPad and read for hours. White text on a black background is a godsend.
(I know that's what night more basically is, but I do it under the accessibility settings. Apple is lagging on putting a dark mode on their products).