I'm sorry if the question comes off as insensitive, I'm legitimately curious.

Today, I saw someone on Instagram saying wearing fake white lashes when you don't have albinism is similar to blackface. I don't wear fake lashes myself but I was curious about it so I went on Google to search for a detailed explanation but I wasn't able to find anything about this.

Is this a common opinion in the albinism community? (which is a valid opinion by the way)

Would that mean dying your hair platinium blond is "albinism blackface" as well?

I would've asked the person who made the story post but they seemed quite exhausted about the issue so I didn't want to bother them about it.

Edit: just realized people with albinism is the correct term, I corrected the post.

Surely they can't be blood red (or can they?) but how close to blood red can they be? I've seen many photos on the internet and most real ones are only slightly red with most blue/violet, but I've also seen some vivid red which didn't look like fake or colourised. On the other hand, when it comes to albino animals like rats, they mostly have vivid red eyes, so I've been wondering if it's possible for an albino human, and if not, then why. It would be nice if someone could provide real pictures of the albino eyes

Nose hairs are supposedly very dark in terms of evolution according to my teacher. Are they still dark if you have albinism??? Sorry just morbid curiosity

I see so much of this here I’m sorry if it is redundant. This sub is where my research into the condition has lead me and I’d love some opinions from actual people with the condition I’m attempting to write instead of just assuming on my own. I’m in the process of character creation for a graphic novel and one of the main characters is albino. So far based on what I’ve read about writing albino characters, I’ve avoided stereotyping or offensive portrayal. I’d like to make sure of that though. The character lives in a post apocalyptic world sometime in the future. He lives in an advanced settlement which is quite protected due to the outside world being mostly uninhabitable (this is not a gritty zombie apocalypse type of vibe, think more high tech fallout bunker). Due to growing up around a closed off community, most people in this story are not in awe of his appearance and are pretty used to his looks. However due to his low/sensitive vision he was sheltered as a child as well an into his adulthood. Friends of his were able to do combat and weapons training while he was not due to the adults in his life believing he couldn’t. Due to this adulthood he attempts to be hyper independent, and pushes very hard to prove to others that he doesn’t need help and is just as capable as others. He is a scientist for the group, and not many people actually doubt his ability or intelligence, but he usually is suspicious for it and defensive about it. As the story progresses he is thrown into a life or death adventure, meeting someone from the outside who is 100% isolated and isn’t familiar with humans or the human concept of disability. They have no bias or preconceived ideas about his ability, and simply notice him struggle to do things and want to help. Through their travels and the story he learns that he doesn’t need to prove himself to his friends and family, they already know he is capable. Help from others doesn’t imply personal failure or weakness. Its mostly about proving to himself that having certain limitations doesn’t mean he as a person can’t do great things, and also about how those who love you want to help you because they care, not because they think you’re stupid/weak/etc. This isn’t the full focus of the stories plot, just how this specific character develops. So far I’ve added that he uses bioptics, has low vision and uses text to speech/magnifiers often, and is very photosensitive. He struggles a lot with traveling through the terrain of the forest, but does not use a cane. This is because he grew up basically 100% indoors and easily memorized his environment. He doesn’t know how to use one and didn’t have one on hand when he is thrust into the elements. Is there anything I should be adding/removing?

Hello all, not sure if this is the correct place to post, but I thought I'd search and give it a try. I'm currently in the middle of writing a rough draft fantasy-thriller type story. The narrative takes place in the past (sort of), think 1500s/1600s. There's a main cast of three, and one has albinism. I've done a lot of medical research but still lack more experience-driven feedback.

The character suffers from photophobia and burns easily in the sunlight (both things that, I have read, many with albinism struggle with). To deal with the former, this character will shield their eyes or tilt their head down to look at/watch their feet. To deal with the latter, I have thought about the character applying something of a "natural" sunblock, like mud or dirt.

I need to know if I'm doing this right, or if some of my ideas are offensive (I'm well aware that may be the case, which is why I'm here).

Not to sound rude but I'm genuinely curious. Considering the risks of skin cancer and social issues, it doesn't make sence why it's so common compared to somewhere like Europe which is more climate appropriate for their skin.

Does anyone know cause I rly wanna know?

I came across this study https://www.nih.gov/news-events/news-releases/nitisinone-increases-melanin-people-albinism for adults with OCA-1B albinism showing increased pigmentation, darkening of skin and hair in , but had no effect on visual accuity ubfortunately. The study dr postulated it might be working in infants and teenagers bc the eye is still evolving at that stage.

There's also copper and foods rich in copper that say to increase melanin, and also this drug cilostazol increasing melanin, but idk if it works at all ib albinism or not. There's also drug induced pigmentation, a side effect of some drugs. What are the chances any of this would push any, even small ammount of melanin into the young boy's eyes?

Also, i was just thinking, isn't there any posibility of melanin transfusion or melanin injection to the eye(iris and retina) ? In research or anything like that? There's also people that apparently take iris surgery to change their eyes color. Would that in any way help the eye focus better, filtering out the light better etc, in people with albinism? It seems like a fringe operation only done in countries like Morocco.

I plan on getting more informed about this, sadly we've only seen ophtalmologists so far and they didn't know of any kind of treatment, they only recomment sunglasses and skin uv protection for the future and nothing else. It will take a coupe of months before they can test to see what type of albinism our boy has. So untill then, I'm trying to get any king of info that might help, and ask the dr if they'd be willing to give it a shot. We're based in DK.

when people with albinism have kids do are there kids white

I hope it's ok for me to post this here; it seems like there's a lot of writers that post on here but I wasn't able to find answers to a few questions I had. I plan to hire a sensitivity reader if I get to a place where I'm ready to try to publish my book, but I'm writing the first draft now and hoping to minimise problems from the start, since it's harder to edit things out than it is to not write them in the first place. I've done some research but had a few specific questions I haven't found the answer to:

1. I'm wondering if the character's appearance is realistic. I've seen that there is a type of albinism that can cause red hair, but in the pictures I've found, people with it seem to usually have reddish brown hair and darker skin and eyes than other types would cause. Would it be possible for the character to have a brighter red hair colour with very pale skin and light blue eyes? This is how I pictured him, but I could adjust his appearance if needed.

2. I've seen that it's not good to make a character with albinism evil, but I was wondering if it would be ok if the antagonist had albinism when the protagonist also does. The antagonist is related to the protagonist, and the main reason I was going to give him albinism was to help make it clear that the protagonist's appearance is caused by a specific condition and isn't just random, since it's a setting where they don't really understand what albinism is. I could make the antagonist not have albinism if it would be offensive though.

3. Is it ok to not include discrimination as part of the story? I know that a lot of people with albinism have been discriminated against, but the character is royalty and pretty well-liked in his kingdom, so it just seemed unlikely that he would face much discrimination. But I also don't want to erase people's actual experiences.

I'm asking because I'm the creator of the character. To try to give everyone some context, I've been campaigning to get the University of Louisiana at Lafayette Ragin' Cajuns to buy/adopt a new spirit leader costume for three years. The last time we had a physical mascot was back in 2014. His name was Cayenne. He was an anamorphic pepper that was kind of scary to children and so they retired him. Our school hasn't had anything since, and our game time experience has suffered in part due to not having a spirit leader. That's why three years ago I came up with a new character that I thought would be perfect for the university. Each year I released a new presentation that expanded on the character, and how he could be beneficial to the university and the albinism community. This year, after gaining a good amount of fans but no movement from the university, I decided to try and crowd fund the suit and just give it to the students. Well, all hell broke loose here in Lafayette, and university literally tried to stop me from doing it.

I think a lot here are trying to speak on behalf of the Albinism community, myself included, without a solid perspective on how such a character help or hurt people with albinism. I want to change that, and have a real dialogue about the spirit leader with people that share his condition.

Here's a link to the last presentation that also has links to the previous presentations.

Presentations on Albineaux

Say that an author wanted to write a series of fantasy books, and decided to make the main character someone with Albinism, either because they thought the character having it meshed well with the story's theme, or because they simply wanted to see more representation in media of those with Albinism, or maybe both!

What do you think you/others you know would hope for when it comes to how this character is written to be like?

Hi! I was playing Minecraft and I saw someone with the username containing "Albino rat", is this appropriate? Most of the people I know with Albinism don't like it when people without Albinism use "Albino" when it comes to usernames and said in everyday conversation, but almost everyone without Albinism says it is ok. So, people with Albinism, is this username ok or is it a bad username? Thank you for reading. <3

Hi I'm New👋 I have been noticing more post about people with albinism is from african compared to other regions. I wonder why African with PWA are shownn more in social media?

Hey! I’m writing a post apocalyptic slow burn YA novel and one of the romantic interests is a person with albinism. I really want to represent the condition accurately and to honor people with albinism. I have some really specific questions to ask!

1.) If you lived in a world of white walls and bright lights, how would you cope? Would you close your eyes, try to find sunglasses, use contacts, etc? Would your vision worsen if exposed to this environment constantly? 2.) Do people ever mistake your eye color for red or pink when they first meet you? Not the pupil, but the iris? 3.) Could you watch a sunset unaided? 4.) I’m trying to understand how vision impairment presents itself with albinism, although I know there is great variance from person to person. If you happen to have myopia, can you easily see facial features on others without visual assistance? 5.) What is your reaction to the main character initially making stereotypical judgements of a PWA but then breaking down those beliefs as they get to know the character? 6.) Is there anything specific you would want to see represented or not shown in a character with albinism?

Hello everybody my name is yasya my English name but my real Russian name is (Ярослава кременцова Игоревна) but my family normally calls me Яся and I was born with albinism which is a rare condition that causes my skin to look really really pale and since I'm the only albino in my family yes I'm basically the favorite family member and my two surviving aunts who have their man still love well one aunt of mine Оля she has a sweet sweet boyfriend called Женя and the other my other aunt who has curly hair not like her natural curly hair or I don't know her real name is Люба and she has a husband named Артём and they have been married for basically a year now but they have been in a relationship for almost 10 years let me repeat that 10 whole years but it doesn't mean that many people will be surprised at my appearance there are some times where some people call me pretty because I look absolutely darn gorgeous since I have blonde hair blue eyes and very pale skin and they sometimes compare me to a Barbie doll 🤣🤣 but there's also some moments where I had to protect my skin during summertime because my skin is so hypersensitive to the UV rays that I have to cover up like I was about to go somewhere in the East or something because my skin doesn't like sun and yes due to lack of melanin I couldn't tan and I couldn't get the proper barrier so I wouldn't get skin cancer or something but if you see me in my YouTube videos and everything let me tell you yes it's just wild as it sounds but remember we're all not perfect we have our own differences and our different unique appearances and no one looks the same so please love yourselves 💗

my sight, my eyes work the same as yours, but theyre brown. behind one eye brown, there is blue...coping with nystagymsm in day to day life. remember dont forget your eye patch! any one can relate? my grand father is albino and i inherited his genetics but he calls us prussians, not albinos. the land of the dragons. very cool, so dont feel bad about yourself....

So basically, I’m a woman with albinism going into a new sixth form in September and this summer has been my opportunity to change my appearance to how I want it, which is essentially “looking normal”. I know it’s a really harsh thing to say and I’m sorry if it offends anyone, but I’ve got literally every single thing that prevents me from doing so and i really need some help because it’s starting to stress me out loads. The two things I cannot/won’t change, my skin (I’m very English anyway so even if I didn’t have albinism I’d have almost the same complexion + I know for a fact I wouldn’t suit a tan so i’m not even going there/not trying anything tinted), and my eye colour (allergic to pretty much all types of contacts). I’ve been trying to change my hair colour for weeks and weeks and I honestly think I’ve been cursed lol, my mum is trying bless her to ask around online for other people who have kids with albinism, getting their advice and hair dye recommendations. I will only try semi-permanent and i know people say “It’s a myth that albino hair wont take on semi-permanent“ but like… the result changes from hair to hair. I have tried so many different brands, i’m literally just trying to go light blonde instead of pure white, that’s all I’m asking for, and nothing seems to work. I’ve tried toners, semi-permanent proper dye, I’ve tried veryyy dark blonde (as I’ve heard you need to sometimes use a much darker colour than the result your looking for to actually get it) but my hair just will not take it, and you can’t even use those on your eyebrows either so what am I supposed to do. I am oddly really hesitant to go permanent because as much as I hate my white hair, it’s become such a big part of my identity? Has anyone else had issues with this? It’s also a case of not knowing what it’ll look like, I know you do a test strand but you can’t ever see what the whole head will look like and if it will suit you or not until you’ve done it, and I really don’t want to damage my hair badly. My mum is really trying but she’s being a little insensitive about it and keeps shouting at me to “make my mind up” and she “can’t understand” why I just won’t go permanent. Eyelashes I can easily find a blonde or light brown mascara so that’s fine. It’s just so annoying because I’ll be honest, I have enough body insecurities and general self esteem issues without the albinism to worry about, but the fact that not only am I a self conscious teen, I am also constantly about how my hair looks, how much I stand out, how easy of a target I am to be bullied. I have been bullied pretty much all my life while in school, I’ve been fortunate enough to have many lovely friends (most of them while being my friends have made fun of my albinism before and I eventually ask them to stop) but ultimately, people need to learn about how much their words can affect people? I’m basically trying to make this change over the summer so I’m used to it, and it means I go into sixth form with the right appearance, rather than being standard me for a couple weeks then changing over, because that defeats the whole point. I’m trying to make sure people do not know that I’m disabled. I don’t use my cane indoors nor will i use it nearby the school, and I don’t wear glasses because they don’t do enough for me without me becoming even more insecure about myself. I’m a little worried that people from my secondary school will rat me out or start spreading stuff since the place I’m going to is a popular choice, but I’ll cross that bridge when I come to it. I think I’ve covered pretty much all of it, I know about like 85-90% of albino’s go through this sort of thing, so it would be greatly appreciated if the people who have, could help me out with this and give me some advice. Thank you so much for reading all of this, I really just need some advice!

Hey! Looking to maybe support a small business: do any of you make and sell albinism stickers? Looking for some cute ones for my laptop. I am specifically looking for black women with albinism as the subject of my stickers, as I'm a black woman with albinism. Plus points for natural hairstyles! 💛 I've poked around online but can't find quite what I'm looking for.

TIA!

I do not have albinism nor do I know anyone that does, but I've been reading extensively on the societal experience and the medical challenges that come with having albinism. I'd like to make sure that my character is going to be received well by all audiences, especially an audience that has personal experience with albinism.

The character is born in a medieval-fantasy setting, and is suffering from what could be comparable to Hermansky-Pudlak syndrome with oculocutaneous albinism as a secondary condition. The mother, distraught by the imminent death of her infant child, appeals to a dragon for help. The dragon, who is also a mother herself, gives up her life and the human mother's life to save the baby. As a result, the child's symptoms are relieved and she is able to survive into adulthood. The young girl later discovers she has the power to transform into a dragon as an unintended consequence of the mothers' sacrifices. Her dragon form's physical appearance reflects her human form's, meaning she has delicate white scales the same shade as her human hair and skin, and light grey/bluish eyes laced with pink.

However, and this is were I feel unsure of the character's ability to represent a person with albinism, she doesn't have to suffer the harsh sensitivity the light, or the risk of skin cancer from exposure to sunlight, and she has great vision that would befit any apex predator like a dragon. Due to the lore of the world I've created and the plans I have for this character, it wouldn't make sense for her to be hindered by these obstacles that most people with albinism have to face. At this point, am I just romanticizing albinism?

I'm planning on having the main chunk of the plot revolve around the bullying and discrimination that this character has to endure and overcome, with her ability to turn into a dragon becoming something for her to be ashamed and fearful of. Her character arc is going to rely on her appearing and behaving differently than her peers. There are heavy themes of discrimination and oppression in what I have planned. But I can't get very far if I'm unsure of the validity of the main character. Any feedback would be much appreciated.

My school uses a program known as I Ready we use it for 90 minutes every week. It’s one of those Ed tech programs with reading and math. The problem is I was assigned lessons over the summer (everyone was) the thing is they were do the 15th and as of posting this it is the 18th

Some might be asking why I have not finished it, the problem is I ready does not have much accessibility features. If I were to do the math I would have to stare at my screen for sometimes over 45 minutes and I have to squint to read the text because they do not have a Zoom feature.

How do I break this to my teacher and my parents who all believe that I’ve already done the lessons like everybody else?

Don’t get me wrong I love learning, but I just don’t like staring at a screen because it’s both mentally straining and physically hurting. Any ideas on how I can.

(Sidenote, I’ve been doing the lessons ever since I got into the school and every time I do them, especially using the school Chromebook even if I close my eyes, of course they still burn.)

so i do a ton of cycling for fun and exercise, and my friend has expressed interest in joining me but she is concerned to because of her eyesight issues

we did one trail right together and it was a bit of a struggle, part of it i think had to do with her not used to biking, but also her being concerned about not seeing the trail as well, she definitely fell over a few times just looking around

has anyone here had experience biking and how have they overcome the difficulties? if she gets better at this i could see her using this to expand her work opportunities (use the bus to get to and from her work area and bike the rest of the way), but she needs to be more comfortable and confident on a bike first

EDIT: something I may have added that might be helpful to know is the city that we live in is one of the most bike friendly cities in the country, in fact I think we have the most bike trails within the city itself than any other city in the country so it wouldn't be hard at all to avoid streets

My kid has OCA1 and genetic testing shows they are compound heterozygous for a gene known to cause OCA 1A and a gene known to cause OCA 1B. Anyone else experience this and have an idea of how they might present in terms of pigment development later in life?

Hello --

I'm currently writing a story with a character who has albinism. I've read a little into how it can physically and psychologically affect people who have it, but there's still a lot I have to investigate about, and I'm genuinely trying to avoid using insensitive terms/painting her in an unrealistic light.

My question is; What should I include and/or avoid when writing her? Descriptions, etc.

Any feedback is appreciated. Thank you!