Hi everyone! I've been wanting to make a video talking about living with albinism but I thought I would gather some more questions that people would like answered! I'm new to this so sorry in advance if I get some things wrong!

As proof, here is me in my natural state: https://imgur.com/a/n0L8vd5

Comments: 2523 • Responses: 67  • Date: 

yalik7563 karma

What do you love most about yourself, and why?

littlestjelly7839 karma

I think this is a really sweet question and I really can't think of anything specific at the moment. I would like to think I'm resourceful and resilient!

sadcthulu4060 karma

What kind of comments or questions do you normally get?

littlestjelly6626 karma

It really depends on where I am. I grew up in a rural town in SE Asia and I used to just get called "ghost" a lot.

Nathansp19844761 karma

Roll with it, Ghost is a pretty badass nickname in my opinion

ruiyanglol24872 karma

She probably get called “Gui”, which isn’t exactly positive. Just because Ghost sounds awesome in English doesn’t mean it does in Asian languages.

The best translation would be “unclean/dirty entitity”

littlestjelly5340 karma

I was thinking of a way to answer them but this is exactly it. It's not always what they say but also how they say it.

illegitimatemexican142 karma

Yeah, it’s messed up when they use that hard H instead of the soft H.

littlestjelly268 karma

Haha, it took me a while to realise that three and tree weren't meant to sound the same.

OnfiyA2612 karma

Damn mad respect on you for posting this

Do you have any siblings? How's your relationship with your parents?

littlestjelly2142 karma

Haha, thank you. I'm beginning to wonder if I should have! I do have siblings and I'm quite close to my parents.

HolyHipHop_TJ890 karma

Do your siblings also have Albinism?

littlestjelly1645 karma

Nope, no one in my family does so it was quite a surprise when I was born.

idec091253 karma

I am black and was adopted at birth by an extremely caring white family. Have you ever felt like you don’t fit in, regardless of being loved?

littlestjelly2162 karma

Yes and it is really hard to articulate to other people because sometimes it ends up sounding like you're ungrateful.

TheSinningRobot337 karma

I havent scrolled too far yet. Have you been receiving negativity from posting this?

littlestjelly916 karma

Some of the early comments stung a little! "Geez, I knew I looked weird but some of these people are a bit much" was how I felt.

nylestandish1884 karma

Which country do you live in and do you experience any negativity due to culture or superstitions?

littlestjelly4242 karma

I used to live in a small town in SE Asia and there was quite a lot of superstition. Curses, condemnations upon my family ..all that jazz. Of course, people also thought I "must" be half Caucasian (implying adultery on the part of my mother) which wasn't great in a traditional community either.

I used to get called ghost a lot and when I walked on the streets, people who stare or glare and children would often come up to me and point or even just touch my hair without asking when I was at a restaurant.

I live in Europe now and that has made things a liiiitttle easier because people stare a little more discreetly now!

eternalrefuge861713 karma

Are you in a relationship? What challenges does having albinism bring to a romantic relationship?

littlestjelly3072 karma

I am. Besides self-image issues (which impacts all areas of life), being visually impaired means that my partner helps me with seeing steps on the sidewalks or uneven streets etc.

sadcthulu1708 karma

Is your vision effected at all?

littlestjelly2916 karma

Yes, it is sadly. I am registered as partially sighted and cannot drive. I have nystagmus, photosensitivity, astigmatism...the whole works!

LillaMartin1182 karma

Damn... didnt even know albinism affects vision.

littlestjelly1655 karma

Yep, many people with albinism have some degree of visual impairment!

iamseamonster42 karma

Yep, in different ways for different people, but from what I remember from genetics, usually the macula (part of the retina) does not fully develop, and also lack of light-absorbing pigment in the eye causes over-sensitivity to light.

LillaMartin21 karma

So... serious question here... if people with albinism are light sensitive. Sorry Im not english speaker so i lack better words: do they see better at night time compared to day?

iamseamonster55 karma

No, that's a common myth. Again I am not an expert and it's been a while since I learned this stuff, but I believe the lack of pigment (melanin) while causing increased sensitivity to bright light, also decreases the ability to see in low light. There may be other things at play too. I think I remember something about underdevelopment of parts of the eye that reduce the 'scattering' of light in the eyeball, which makes low light so "spread thin" in the eye that they can't see much at all.

littlestjelly92 karma

Yep so my eyes hurt less at night but I don't see better.

littlestjelly29 karma

On point!

Emelius87 karma

Are your eyes blue?? Amazing!

littlestjelly159 karma

They're blue-grey ish. Thank you!

neuromorph-51 karma

without the red eyes, she appears to be albanistic. not full albino. Albanistic people often have very bad vision.

littlestjelly49 karma

So ..I'm not sure what this is about but I definitely have albinism. It's a misconception that people with albinism only have red eyes!

tehmooch1591 karma

So, after reading through all these comments, I really hope this isn't weird but I thought "this girl is adorable and I want to do something nice for her!"

So I made this for you.

I have to ask a question too, I think. So I'd ask whats your favorite genre of movie, and fav movie in that genre?

Youre awesome and anyone who tries to make you feel like less of a person for your condition is wrong!

(I realize this may not be apparent on the internet so let me clarify that I am a straight female, not in any way trying to come off as a creeper on the internet. I legitimately just love your look and felt like drawing.) Live your best life, and fuck societal norms! ♡

littlestjelly1069 karma

Oh my god. I've never gotten fanart before. You and the other user with the poem are making me cry. Your art style is absolutely adorable - where can I follow your art? I love cartoons and animated movies. Disney/Pixar, Studio Ghibli etc! I can't see very well so how obvious they make the facial expressions and the backgrounds mean I get to enjoy the movie as much as anyone else!

Fak3Anon1573 karma

Awesome ama and thanks for talking to us.

Out of the top of your mind, 1) What's the most annoying consequence of your condition?

2) What's the best thing about it?

3) What do you wish people knew about albinos?

littlestjelly2825 karma

  1. The low vision and sensitivity to light / the sun. I think albinism would have been a cool feature if it didn't also come with actual disabilities.
  2. Being memorable, I think. Other aspects is that I think it helps make me more empathetic towards people because I realise that there may be things under the surface about them that I'm not aware of
  3. Please ask first before touching my hair / skin, it's really freaky when people do it without asking.

midwitchesandmagic395 karma

As a Black woman who grew up with mostly white people, I am with you so much on #3!!!

littlestjelly658 karma

That must not have been easy for you either! People then go "oh but they're just admiring you" - yeah ...like I'm some petting zoo animal, sure.

midwitchesandmagic230 karma

Exactly! At the one of one of my favorite songs (Cantu by Anime), there’s an outro that goes,

“Who has nice hair? Me

Who can touch my hair? Not you

Did you think this was a petting zoo?

Do I look like somebody's dog?

Do I look like somebody's cow?

Do I look like somebody's lamb? No!

Sit down!”

And it’s my favorite!

I mentioned this in another comment but if you like to read (I read them digitally through library ebooks, which I imagine might be easier with your vision, since you can change the size of the text?), I really, really loved Nnedi Okorafor’s Akata Witch books. They really helped me reframe being different. Here’s a short quote: “We embrace those things that make us unique or odd. For only in these things can we locate and then develop our most individual abilities.”

Anyways sorry for the wall of text. Thanks for taking the time to answer all our questions. Best of luck with everything to you. Feel free to DM any time if you wanna chat about the books or anything. 🖤✨

littlestjelly145 karma

Thank you for that! I'll definitely get that book when I'm done with my coursework (guess who's procrastinating). I would definitely love to have a book buddy!

thirty7inarow3 karma

I've gotta piggyback on this one because of your third answer: does your skin and hair feel any different because of your albinism? I wouldn't have assumed they did, so I was a bit surprised about people wanting to touch you (let alone without your permission).

littlestjelly9 karma

I really don't think so. I've been told that my hair and skin is quite soft but I'm pretty sure that's just moisturisers and not doing anything to my hair. I think people just like touching things they think are different.

IAmTheComedianII1347 karma

I have vitiligo and I find my white spots get horribly sun burned in no time at all, even with max SPF sunscreen.

I can imagine this being a daily battle for you, but obviously on much larger scale and to a deeper degree. What methods have worked for you?

littlestjelly1325 karma

Mm, I feel your pain! I end up not going out much if I can help it. If I do, I make sure to re-apply sunscreen every hour or so. Hats really help a lot! What have you tried? I'd love to learn any tips you have too.

Saint4091064 karma

Has anyone mistake you for another ethnicity, if so which ones?

littlestjelly2050 karma

In SE Asia, some people thought I was Caucasian. Although, older people never seemed to make that mistake because they notice that my facial structure isn't Caucasian. In Western countries, I don't think I've ever been mistaken as anything but SE Asian. With Korean-pop being really influential now, some people just think I'm a K-pop wannabee (and won't believe me when I say my hair is natural).

EvyEarthling602 karma

Speaking of hair...since you don't have to bleach, your hair could probably take any color really well! What colors would you like to try, if you were to dye it?

littlestjelly1110 karma

I've had it dip-dyed pink before and had it highlighted lavender. It takes well to colour ...a little too well. If I use temporary dyes, it takes much longer than it should to wash out. I've always wanted to go for a bright honey blonde/blorange type of colour.

thewifeaquatic1263 karma

The idea of being mistaken for a k-pop wannabe makes me curious: Have you ever thought of doing some fun YouTube videos on hair or makeup. You could do the coolest looks. You could probably provide a lot of inspiration, if it were anything you were interested in!

littlestjelly431 karma

As lame of an excuse this is, my partial sightedness makes make up really difficult for me. I've been trying and learning but I don't think anyone will want videos from me anytime soon.

ackermann190 karma

Would it have made your childhood easier if your parents had let you dye it black?

littlestjelly477 karma

I think the hair is one thing. Being unnaturally pale is another. Being visually impaired probably is the worst bit.

Elpharae94 karma

some people just think I'm a K-pop wannabee (and won't believe me when I say my hair is natural)

This would trigger me so hard if I were you. How do you deal with this?

littlestjelly174 karma

As Miss CrispyBacon says, you sort of just laugh and let them think whatever.

Eyesalwaysopened778 karma

Hey, some of these comments are a bit much; thank you so much for doing this AMA! You’re providing an interesting view on the condition. I appreciate it.

What would you say has been the most challenging part of dealing with albinism?

littlestjelly825 karma

When I was younger, I think it was looking different all the time. I remember feeling crestfallen when I'd look at photos with my friends and suddenly remembered that I stood out like a sore thumb. With age, I think the visual impairment really sucks, it limits a lot of things I can do and not being able to enjoy the sun like many other people is also a bit annoying.

theblindingape536 karma

If you drink alcohol, do you turn pink?

littlestjelly1539 karma

I glow the most magnificent red.

AcquiesceAccordingly610 karma

Fire walker,

Night time wanderer,

Glowing lightning-

Flame amidst thunder.

Walking firmly

Yet gently passing,

Her radiance everlasting.

Questions come

“How may you be

This way so light

And also free?”

A smiling spirit,

She said to me,

“Love yourself

Most earnestly.”

Her Glow continues,

Burning red.

Confidence flows

And to others is shed,

Magnificent light

In the darkness;

A moonlight Queen,

She shines among us.

Thank you for doing this AMA. This comment put the most amazing visual of you in my head which inspired this ode to you. I hope it is received with my respect. :)

littlestjelly377 karma

Awww, I'm really touched although a little abashed now! Saving this forever.

sm1ttywerber522 karma

Hi! I actually know a girl with this same condition! She was adopted from China into the US. She said that her birth parents thought she was “cursed” and gave her away. My question is...

While living in Asia, have you experienced any people avoiding you or mistreating you because of your condition?

littlestjelly584 karma

I hoped she found a loving family in the US!

I think I was lucky in that I don't think any adults really mistreated me because of my albinism but there was a lot of unsaid "oh, she will never amount to anything / is a burden" sort of vibes.

skunkbollocks514 karma

Have you tried VR? I happen to know a few people with albinism through the local VR community. Apparently it's easier for them to see in the HMD than without. Staying inside out of the sun seems to be a convenient side effect.

littlestjelly479 karma

Huh. I have not tried VR but now I suppose I should! Thanks for that tip.

moderatelime441 karma

I see that you already answered a question about your vision. Are there any other health challenges associated with albinism? I think most people mostly think of it as a cosmetic issue.

littlestjelly1051 karma

It's mostly the vision and the extra sensitivity to sunburns (and skin cancer!)

Of course, if you're my highschool biology teacher, you would say one of the risk of having albinism is "never getting married".

littlestjelly388 karma

Hey everyone, thank you so much for your questions and your kind responses - I really appreciated them! I'm off now so will stop replying as much. I hope your weeks ahead treat you well.

cydonia90271 karma

Your blue eyes are beautiful!

Many Asian pop stars use colored contacts to make their eyes look blue or purple. Have you experienced other Asian people being envious of your naturally blue eyes?

littlestjelly308 karma

Some girls have told me they wished they had my blue eyes when I was in school but it wasn't a large number or anything. I think the whole colourful Asian pop stars hadn't affected my little town back then!

GrandNewbien255 karma

What do you do for living?

littlestjelly610 karma

I used to be a data specialist for a large professionals firm! Now, I've returned to do a Masters. (sorry if that's a bit vague, I just don't know how private to be on the internet!)

yoyo_sensei245 karma

Where, in media, have you seen yourself reflected? Do you think depictions of people with albinism are accurate?

I feel like my own view is that albino people are rare, but I can’t escape the notion that that view is enforced by a media that doesn’t acknowledge albinism when, in truth, there’s probably a much greater population of people with albinism.

littlestjelly841 karma

So, I've heard that people with albinism tend to be portrayed as evil in movies? However, I have not seen many people with albinism at all because I mostly watch cartoons / animated movies because I find them easier to watch due to my vision. I once watched Band of Brothers and totally misunderstood the plotline because I thought two different people were the same person the whole time.

As for rarity in real life, I've only once met someone with albinism. it was a little girl with her grandma at a restaurant. The grandma looked at me like I was a gift from God because I think she was really afraid something was wrong with her granddaughter. We spoke different languages (I understood hers to some degree) and she asked if it hurt when I was in the sun. I said it did and you could see the relief wash over her. I suppose it really helps to realise her granddaughter is not alone.

AtomBombGoblin215 karma

favorite ice cream flavor?

littlestjelly363 karma

Mint chocolate chip! Or hazelnut.

moopie2133 karma

Hi! Did you ever know or meet any other people with albinism growing up?

littlestjelly384 karma

Hey there, I answered this in another comment:

As for real life, I've only once met someone with albinism. it was a little girl with her grandma at a restaurant. The grandma looked at me like I was a gift from God because I think she was really afraid something was wrong with her granddaughter. We spoke different languages (I understood hers to some degree) and she asked if it hurt when I was in the sun. I said it did and you could see the relief wash over her. I suppose it really helps to realise her granddaughter is not alone.

LordSebZ119 karma

Hey I have albinism too! Im from Puerto Rico. Nice to see someone make an AMA about the condition.

I wanted to ask you if you had a condition called Hermansky Pudlak along with your albinism? as many or most albinos from PR do

littlestjelly111 karma

I just looked that up and no, I don't think I do. How is it like having albinism in PR especially with Hermansky Pudlak?

mecail117 karma

It’s a bit cliche but what’s your dream? What’s something you really want?

littlestjelly266 karma

This is going to be boring but I'd really like to have "normal" eyesight. I remember dreaming about being able to see the whiteboard from my seat when I was in school.

mecail54 karma

Ah... damn is there a way it could be improved? Surgery? Or idk

littlestjelly141 karma

Sadly, science has advanced far enough for what I have but maybe it will one day. I can't wait to be able to see houses in the countryside on train rides.

varys-the-spider45 karma

Are you able to wear glasses? My friend who is also albino uses specialty glasses with a magnifier on them that allows him to drive during the day.

littlestjelly88 karma

I've tried special glasses and different types of magnifiers but they just don't seem to work for me. I'm really glad it works for your friend though!

TheRiotB34R113 karma

Did your parents ever raise you differently being having albinism?

littlestjelly191 karma

Yes they did but I think most parents would. I didn't go out super often because it's really hot and sunny outside but I think they also probably did that to avoid being shouted at / laughed at randomly on the street.

SirenShoe96 karma

Hi and thank you for setting up this AmA! In my hometown— I'm from an SE Asian country as well—I know of siblings, three sisters, who all had albinism. So this is why your post caught my attention. Something I noticed about those girls is that when they hit the teenage years, they all dyed their hair black, penciled in eyebrows and wore dark contacts— basically trying as hard as they can to look more like the people around them. My question is, did you ever feel pressured to alter your appearance to look more 'acceptable' or 'familiar' to people around you?

littlestjelly91 karma

When I was a teenager, this has never crossed my mind. I think because I grew up in a small, traditional town, I just never thought of getting coloured contacts, dyeing my hair etc. My school was really strict on hair dyes and makeup. It's hard to say if I would have been tempted if I had known it was a possibility back then.

sbowesuk93 karma

Hello from Scotland! So are there any surprising benefits/upsides you have found to living with albinism?

littlestjelly204 karma

I think one of the upsides is that people don't tend to forget you (which can be helpful in interviews).

DangerOtter64 karma

Who gives you a harder time, your culture/countrymen or anyone in the West?

littlestjelly111 karma

I think they're different. People from where I'm from acknowledge straightaway that I'm different and that can sometimes have its benefits because you know what misconceptions they have about you etc so you can tackle it directly. Of course, sometimes they won't ever understand but at least you know that. Where I currently am, everyone is more accepting but they also tip-toe around a lot of things so I think it's hard to really know what they think. "Harder time" has more to do with how unexposed to different things people are I think.

ArtIsDumb47 karma

If you could go see any band live, who would it be?

littlestjelly96 karma

I used to be really into Against the Current but I haven't really been following any bands lately. I've always wanted to go to a Disney movie premiere if that counts?

Notceltic40 karma

Since I haven't seen this asked yet, and it wouldn't be a Reddit AMA without it... Squirtle, Bulbasaur, or Charmander?

littlestjelly109 karma

All of them. I restart the game constantly because I regret my choices.

quirkycurlygirly38 karma

Have you been approached about fashion modeling? Is that something you would consider doing?

littlestjelly88 karma

I have, randomly on the street. I've done it a few times but I was really focused on academia back then so didn't really take it seriously. I once almost got cast in a sci-fi movie but I had my finals during filming.

pinniped135 karma

Is there an active community for people with albinism where you live now? Was there one where you lived in Asia growing up?

At what point did you learn that there are others who share your condition and likely many of your experiences?

littlestjelly42 karma

I'm sure there is, I just haven't looked them up / met them. I think I'm still a little nervous about meeting a bunch of people like me!

rsplatpc32 karma

How many times has Wes Anderson offered you a role in one of his movies?

littlestjelly101 karma

None and I'm really offended. Could someone let him know my availability please?

SylverShadowWolve22 karma

Recently there was an article about Japanese schools forcing people with other colours of hair to dye their hair black. Have you ever had anything like that happen?

littlestjelly48 karma

I was lucky in that my teachers knew that my hair is natural. But, in assembly, the head teacher used to emphasize we were not allowed to dye our hair and you could see everyone awkwardly glancing at me.

seawhoreld21 karma

You’re absolutely mesmerizing to see! Literally so beautiful. My question is, when did you realize you were different from most people?

littlestjelly24 karma

I don't think I ever "realised". People just treat you differently and tell you so and I suppose, that's how I always knew. Thank you for your compliment!

mackavelli21 karma

Has the weather been easier to deal with in Europe compared to your home country? I would think a place people consider gloomy would be ideal for you. Something like United Kingdom or Seattle.

littlestjelly76 karma

The weather is much better. I especially love winter when the sun sets at like 4 pm. Everyone around me gets really upset when it's a cloudy, gloomy day but those are my favourite days of all.

kei200020 karma

Did you find it difficult studying a career because of your condition? I have a close friend with albinism and she has been struggling with keeping up with the flow of classes because of her eyesight

littlestjelly31 karma

It was difficult choosing a career and studies can be difficult! I've found some ways that really helped me but it was annoyingly all through trial and error so I would have loved for someone I could have asked - I'm happy for your friend to contact me if she'd like some pointers.

eppinizer19 karma

How do you combat sun burns? Are you able to go for hikes without damaging your skin if you apply the right sunblock?

littlestjelly39 karma

By crying in bed because they hurt so much. I don't often go out in the sun for long periods. When I did, I'd wear hats, long sleeves and lots of sunscreen. Then, I would get really grumpy because I was boiling under all the clothes I was wearing.

jlars23118 karma

might be off base but isn't pale skin revered in parts of asia?

littlestjelly90 karma

Beauty standards are a bit weird, aren't they? You can be pale, but not too pale. Just like how people want you to be tall, but not too tall etcetc

Nobodygrotesque15 karma

If you found out what everyone with albinism had potential to unlock a special power within them what power would you go with?

What’s you favorite food?

What do you like to do in your spare time?

Due to your condition are you a introvert or extrovert?

I think you’re awesome!!

littlestjelly25 karma

The power to change the past. I keep finding out things that could have made life a lot easier! Or, you know, having normal eyesight - to me, that seems like a cool superpower.

No favourite food. It really depends on my mood but I've been craving ceviche.

Reading, drawing, playing games, cooking, hanging out with friends / family.

I'm a chatty introvert.

Thank you, to you too!!

kirakina13 karma

So I have to say I think your absolutely beautiful for one. Now my question.

I have a service dog who helps me with day to day tasks and was wondering where you live is it possible for you to get a dog to help you? I'm not sure if in Asia you guys have service dogs.

littlestjelly20 karma

I think I could get a service dog if I applied for one but I know the waiting list can be quite long and at this moment, I don't feel like I need it as much as someone else on the list might so I haven't applied for one. Do you have a photo of your dog? :D

fgalindoatsjc6 karma

Have you ever thought of dyeing your hair and brows black?

Not to change who you are but to help with how the sublight affects your head/eyes?

Maybe that would help to some point.

littlestjelly20 karma

I have thought of dyeing them although not to black because the contrast would be a bit much for me. But I have a sentimental attachment to my hair colour. It's a sort of "Hey, I have terrible vision but look, my hair's white!"

Helen_of_TroyMcClure6 karma

I don't want to sound insensitive, but you say that picture is your natural state, does that mean you'll ordinarily apply makeup or any sort of other pigment on a day to day basis, or that you did in the past to try and be less conspicuous?

littlestjelly20 karma

Normally, I'd have more make up on. I haven't really tried changing myself too much to hide my albinism because I'd have to do quite a lot of things.

exomagica3 karma

As someone with really really pale skin living in a country where tan is considered “healthy”, I recently had to quit my cashier job because of rude comments from customers. Could you give me advice on how to become comfortable in my own skin? How did you learn to deal with rude people?

littlestjelly8 karma

Aww, I'm really sorry about that, it must have been difficult. People can be so unnecessarily rude. If it helps, being tan is the current hot phase but not too long ago, being pale was a phase in Western countries. Beauty standards weird and change all the time. I really don't think most people care all that much even if they are rude to you so you shouldn't care much about what they're saying. We can be pale buddies, you and I.

Asskicker121 karma

Have you ever tried making your eyebrows darker? This might just be me, but the eyebrows seem to kind of blend in, making it seem like you don't have any eyebrows, at least from afar. I apologize if this question seems rude, I'm just curious.

littlestjelly4 karma

Mmm, I have tried colouring my eyebrows but I haven't been able to find a colour that doesn't look very weird. I'm not great at make up so if you have any suggestions, that would be great!

khmergodpc-70 karma

Do you cosplay? If so which characters and does it make it easier sometimes? Jelly of the natural blonde look.

martinky2435 karma

This comes off as .... uhh.... insensitive

littlestjelly4 karma

I didn't find it insensitive but I really appreciate your concern, thank you.

littlestjelly5 karma

Hi there! I don't think this is offensive so I'll answer it. I haven't cosplayed before but I used to want to do a Namine cosplay (from Kingdom Hearts). Cosplaying in general takes a lot of effort / skill and I'm not sure I could pull it off!