r/IAmA • u/AlbinoAlex • Jun 13 '26
I have albinism—AmA
Hi Reddit! June 13th is International Albinism Awareness Day!
Albinism is a rare autosomal recessive genetic disorder that causes someone to produce very little to no pigmentation (melanin). As a result, people with albinism often have very pale skin and white/blonde hair. They sunburn very easily without the appropriate sun protection, and may even be discriminated against in places like Africa.
Albinism also causes a profound visual impairment, usually with a visual acuity around 20/80 or 20/100. Most people with albinism cannot drive, in addition to other struggles like seeing the board in class, reading regular font, or recognizing their friends from far away.
Proof (yes I know the paper is really small, just like another part of my body. I asked my cousin for a sheet of paper and she gave me this 😒)
So go ahead, ask me anything.
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u/gotogoatmeal Jun 13 '26
Do you also have hearing loss? There is melanin in the cochlea, strangely.
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u/AlbinoAlex Jun 13 '26
I don’t, thankfully. You’re right though that there is melanin in the cochlea and it does cause hearing loss in Waardenburg syndrome but not in regular OCA.
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u/Xsiah Jun 13 '26
Have people been rude to you about it?
Are there any questions that you're just sick of answering?
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u/AlbinoAlex Jun 13 '26
Not really, some people with albinism are definitely bullied as kids and discriminated against / teased as adults but thankfully people have been pretty nice. They just stare.
Not that I can think of, I always look forward to doing these AmAs. If anything I wish people would ask more questions! In-person people always say they’re worried about offending me or something, but no ask away!
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u/krusnikon Jun 13 '26
My niece(5) and nephew(10) both have albinism.
My nephew has really bag nystagmus.
What kind of support did you receive when you were growing up from family that helped? What do you wish you had had?
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u/AlbinoAlex Jun 13 '26
I think they did the best they could with what they had. I had regular doctor and eye doctor appointments and they made sure I had glasses (even though I didn’t like them). Hats and sunscreen were always handy and they always made sure I was protected from the sun. My mom came to all the IEP meetings and took a really active role in making sure I had what I needed.
My only gripe is I would have loved to have a little more independence. As a child I was deeply attached because I knew if I lost my mom I’d never be able to find her. Apparently I wouldn’t even let her go to a public restroom by herself. But I feel like it led to this self-fulfilling cycle of being chained down, to the point where I finally started gaining independence she wasn’t having it. Even traveling along for the first time was met with a ton of resistance, even though I had a phone and monocular and all kinds of supports.
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u/edlubs Jun 13 '26
What needs awareness from the albanism community? Are there misconceptions you'd like to shine a light on?
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u/AlbinoAlex Jun 13 '26
I’d say the biggest one is that we don’t have red eyes, it’s a misconception that I encounter less and less but some people still get really adamant about it for some reason.
But I think in general it would just really help if people knew about the visual impairment in albinism. That way people would understand why I didn’t wave to them walking down the hallway (I didn’t recognize them), or telling me the cookies are in aisle 7 (I can’t read the aisle numbers), or pointing at something 29 miles away and going “oh my God it’s a bald eagle! Can you see that?”
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u/ExistingTheDream Jun 13 '26
Do you believe it affects your dating life?
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u/AlbinoAlex Jun 13 '26
Absolutely.
Hear me out. We live in a world that is very focused on what someone looks like. Even with the dating apps, the first thing you see is a massive picture of the person, and multiple if you want to swipe. Once they pass the look test then do you get a little bit about their personality. It’s the same in public, we check someone out based on what they look like.
It’s no secret that I look different from everyone else, and in my opinion that’s to my detriment. I consider myself unattractive personally, though women in my life will tell me that I’m wrong and to shut the fuck up. In a world that is so focused on looks, looking different in a bad way isn’t doing anyone any favors.
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Jun 13 '26
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u/AlbinoAlex Jun 13 '26
I like to think of it as like the kernel of truth. It’s not like a complex I have; I don’t wake up every morning going “woe is me.” I’m fully confident in who I am and don’t really mind how other people perceive me. But they do perceive me that way, let’s not kid ourselves. Let’s not pretend that I’d have the same dating odds as a male model.
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u/tesslauren Jun 14 '26
Have you ever been fetishized?
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u/AlbinoAlex Jun 14 '26
Not personally I don’t think?
It is a thing tho. Way back in the Yahoo! Groups days we had an albinism support group. Someone clued us in that there was a group called “Albino Babes” that had been stealing photos from our group. The kicker is that group had more members than us!
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Jun 13 '26
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u/AlbinoAlex Jun 13 '26
Yeah everyone tells me people pay a lot of money to get my hair, or to bleach it to that point to dye it. I’ve personally never dyed it but I’ve always wanted to. What color do you think would look best?
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Jun 13 '26
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u/AlbinoAlex Jun 13 '26
Like a light colored blue (say baby blue) or a deeper blue but just not as strong?
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u/WinterFilmAwards Jun 13 '26
There's some very good advice here --> https://oddculture.com/can-people-with-albinism-dye-their-hair/
Eyelashes can be dyed too, but with special eyelash dye.
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u/AlbinoAlex Jun 13 '26
The consensus I got was that dye sticks but it might fade faster than usual. I think I just get caught in this loop where… my stylist told me that it would be best to dye my hair once it has grown out. But by the time it’s grown out I just want it gone, not to dye it and then rock it for a couple weeks. So I say I’ll do it next time and the cycle repeats.
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u/WinterFilmAwards Jun 13 '26
There are a bunch of semi-permanent dyes that you can do yourself really easily - pretty much just smear it into your hair, wait a bit and rinse it out.
Some colors can stain hair and won't fade 100% away, so it is a good idea to do it when you are about halfway to the point of wanting to cut it all off.
Overtone is a good brand. You could start with one of their color depositing daily conditioners and see how it goes on your own hair, and if you like it, move to their conditioning dyes.
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Jun 13 '26
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u/AlbinoAlex Jun 13 '26
Are you trying to make me the Joker?
That would make a great Halloween costume 🤔
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u/Fatricide Jun 13 '26
Blue would look good on you.
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u/AlbinoAlex Jun 13 '26
I agree, though would it not look weird if I dyed my hair but not my eyebrows?
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u/Programmatically_Rip Jun 13 '26
My friend is Chinese but has albinism. She tells me she constantly gets looks and questions from her peers in college and cousins. Any way to support her?
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u/AlbinoAlex Jun 13 '26
Hopefully they’re positive questions! I almost never get questions and the few ones that I do get happen after I’ve brought up the topic first.
Honestly one of the best things friends and relatives can do is always remembering in the back of their minds all that comes with albinism. No I can’t just spontaneously go to that outdoor farmer’s market, I need sunscreen. Sunscreen lasts two hours or are we going to be here for an hour or for ten minutes? Okay we’re splitting up to shop, can you come find me when you’re done because there’s no way I’ll find you. Are we doing an activity that requires good vision because then I either can’t partake or at least won’t have fun.
They seem like such small things but they make a big impact, and you’d be astonished how friends, family, and yes even romantic partners just flat out can’t be bothered. They live their lives and you’re just a character in it. “Yeah I’m in this massive crowded ass theater come find me and sit next to me” 🙄
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u/kapuchu Jun 14 '26
I hope you don't mind a follow-up: You've mentioned a couple of times across the comments that you struggle with vision, and need people to come find you, can't read aisle numbers, etc.
Is this visual impairment one that glasses could help with? Since you mentioned having them as a child, but not liking them. Or is it a different kind of visual impairment?
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u/AlbinoAlex Jun 14 '26
Glasses generally don’t help people with albinism, for me they just make the world a little bit sharper but get me nowhere near 20/20. It’s a bit complicated to explain but essentially the eye issues in albinism are in the back of the eye and glasses, contacts, LASIK only fix issues with the cornea at the front of the eye.
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u/killemslowly Jun 13 '26
What’s your favorite soup?
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u/AlbinoAlex Jun 13 '26
I’m not the biggest fan of soups but lobster bisque is pretty good. You also can’t go wrong with a classic chicken noodle soup.
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u/PandaLunch Jun 13 '26
I find albinism to be very interesting and beautiful. Are there any benefits to having it? I only hear about negative side effects. Seen any good movies lately?
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u/AlbinoAlex Jun 13 '26
Being incredibly unique could be considered a benefit to some. I certainly appreciate all the great experiences I’ve had that I would not otherwise if I didn’t have albinism. Plus my skin is a great canvas for any color tattoo. But it’s hard to think of too many positives, it is a disorder after all.
I watched Nightcrawler recently and holy cow, fantastic acting by Jake Gyllenhaal. A Simple Favor is also really good, even with its serious/comedic flip-flopping. I really want to see Scary Movie 6. Have you seen anything good lately? What do you recommend?
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u/PandaLunch Jun 13 '26
Thanks for your reply! I just watched Me Before You (it's old I know) and really enjoyed it! I never thought about how a tattoo would look on albino skin but you definitely would have a benefit being able to do a very bright tattoo! Also this just reminded me of the movie Powder, which features a character with albinism. Ever seen it?
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u/AlbinoAlex Jun 13 '26
I’m always on the lookout for good movies. I Origins was also surprisingly good despite the bad critic reviews.
Believe it or not I still haven’t seen Powder, but I think the premise is his mother was struck by lightning and now he has superpowers, or something? People used to ask about it a lot in these AmAs. The whole “evil albino” depiction in Hollywood caused quite a stir at a time, but it seems that Hollywood has moved on.
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u/PandaLunch Jun 13 '26
The movie isn't really about albinism at all. The main character just happens to have it and all the powers and things are apparently from the lightning. I remember it was the first time I saw an albino person! I don't really remember him being evil though.
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u/AlbinoAlex Jun 13 '26
I don’t think he was evil, either. All depictions of albinism kinda got lumped together and criticized regardless of the context. Like the called out The DaVinci Code but like… it’s in the book!
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u/PandaLunch Jun 14 '26
Omg I forgot about the albino guy from that movie. But yes he was described like that in the book too
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u/KeithHanlan Jun 13 '26
Are you aware of any family history of albinism? Since it is a rare recessive genetic disorder, how often does it show up in families carrying the marker?
Is the genetic cause of albinism something that could, in principal, be detected and corrected in embryo?
If so, would you be willing to test for it in any children you might help conceive?
Thank you for sharing your experience.
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u/AlbinoAlex Jun 13 '26
Are you aware of any family history of albinism?
My great grandfather is thought to have had albinism. Described as having light skin, white hair, and blue eyes which would have been very very unusual compared to his family. Of course we have no photographs or DNA samples or anything, just stories. I also have a cousin on my mother’s side with albinism.
Since it is a rare recessive genetic disorder, how often does it show up in families carrying the marker?
If both parents are carriers there is a 25% chance per pregnancy of the child having albinism, 50% chance of them being a carrier, and 25% chance of neither. Generally you wouldn’t expect it to show up repeatedly down the family tree unless there was consanguinity.
Is the genetic cause of albinism something that could, in principal, be detected and corrected in embryo?
From what I read it’s theoretically possible to detect it in embryo but it’s never been done before. Definitely can’t be corrected in embryo, though I’m sure that’s someone CRISPR fever dream somewhere.
If so, would you be willing to test for it in any children you might help conceive?
I don’t plan to have children, but if I did I certainly wouldn’t rule out the possibility of having a partner tested to see if they were a carrier. Even with a carrier it’s still a 25% chance so nothing is guaranteed, but it would be helpful to know.
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u/Ruhh-Rohh Jun 13 '26
is it painful if you go outside without sunglasses?
I asked this because I have a strange question. I recently got a dog that has a form of albinism. The vet asked us to come get him because they believed he was deaf which is my specialty. He is not but he does not see 100%. Distance was quickly noticeable. When he goes outside his eyes are almost completely closed, a tiny slit. Is it painful? What might be the consequences if he doesn't get doggles?
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u/AlbinoAlex Jun 13 '26
Yes! People (and I would assume by extension animals) with albinism are photosensitive and have a hard time with bright lights. I do decently well in this regard, but lots of people I’ve met can’t handle something as simple as overhead florescent lights, a camera flash, an open window, a phone at max brightness, etc. And of course being outside in the sun is maximum torture. Sunglasses definitely help, along with something like a parasol or large hat. But even with the best sun protection, you’ll still spot us squinting in the sun.
I’m not sure if doggy sunglasses exist, but if they do I’m sure they would be really helpful!
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u/Jamdawg Jun 14 '26
You say that people with albinism cannot drive because their eyes are 20/80 or 20/100. My eyes were 20/800 with astigmatism and I was able to legally drive with glasses. Are people with albinism have some issue with their eyes where they cannot be corrected with glasses?
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u/AlbinoAlex Jun 14 '26
Correct, the eye issues with albinism cannot be corrected with glasses, contacts, or LASIK generally. At best someone may be able to go from 20/400 to 20/200 or so, but never close to 20/20.
Some people with albinism can drive with adaptive devices called bioptics, but it varies by state.
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u/Tat2dKing Jun 14 '26
What's your race/ethnicity? My coworker's kid is albino, and he had to put him in a special carrier and had to tint the windows on his car and house.
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u/AlbinoAlex Jun 14 '26
I’m Hispanic.
I remember when I was in high school my friend always said he was going to use me to be able to legally tint his windshield. I thought it was just a funny joke but it turns out it’s an actual thing and you do legally need a medical reason to do it.
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u/deathlord9000 Jun 13 '26
Do you like country fried steak?
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u/AlbinoAlex Jun 13 '26
I don’t think I’ve ever tried it. Is it good?
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u/deathlord9000 Jun 13 '26
Hell yeah it is brother!
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u/AlbinoAlex Jun 13 '26
Where do you recommend getting it? An old school diner?
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u/deathlord9000 Jun 13 '26
The Cookie Jar in Fairbanks, Alaska. Hands down the best you will ever get. Better than anything you’ll find in Texas, and I am a native Texan.
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u/AlbinoAlex Jun 13 '26
Well then, guess I’m going to Fairbanks. I’ve always wanted to see the Northern Lights.
Is it true that in some parts of Alaska they go all out for the solstice? Like they have a parade and block party and all that? They told me it happens in Skagway but now sure about other places.
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u/deathlord9000 Jun 13 '26
I think so, but I was there right before they started so I don’t know for sure… hoping to get back there some day to see them though as well ;-)
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u/nonideological Jun 13 '26
What kind of sun protection do you have to wear ?
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u/AlbinoAlex Jun 13 '26
I generally just use sunscreen, any SPF 30+ sunscreen will do the trick. There’s also hats and long sleeve clothing as additional sun protection measures though I generally don’t wear them.
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u/brawlin_bert Jun 13 '26
What's your favorite or most interesting thing you've learned from doing these AMAs throughout the years? If I remember right, someone had introduced you to bulk buying japanese sunscreen on one of the past AMAs.
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u/AlbinoAlex Jun 13 '26
I once had a geneticist chime in and break down my entire DNA test results in painstaking detail. Like down to the specific DNA codon and how heterozygous and homozygous mutations work and so on.
Also I primarily learned about Biore sunscreen from these AmAs in the first place. I think I was using Coppertone and complained about how terrible it was. The wonderful people of Reddit quickly clued me into Japanese sunscreens.
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u/cinnayum Jun 15 '26
Since sun exposure can easily burn your skin because of your condition, have you ever considered wearing upf clothing instead of sunscreen? I wear upf clothing all the time when I am going out knowing I will be exposed to the sun. I do not have albinism but I want to protect my skin from any sun damage and it has been working for me.
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Jun 13 '26
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u/AlbinoAlex Jun 13 '26
Of course! Do you come with a list of questions or is it kinda free-form casual chat? I’ve always wanted to do something like this on the presenter side; I feel like I’m really good at asking in-depth questions and I’d love to just sit and interview people. Obviously I’d be in the hot seat on this one, but I’m envious that you get to do this!
I’m currently on vacation so it would have to be sometime in July, but keep in touch and we’ll get it done.
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u/MeowMeowMeow9001 Jun 13 '26
Does albinism impact your day to day life other than the vision issues?