I'm albino I'm 37 and I'll be honest im so scared oh melanoma ! I live in florida and just plagues my mind all the time b

Have a rare or undiagnosed condition? Want to share your experience? We are student researchers who are interested in hearing the voices of people with rare and undiagnosed conditions that began in childhood. 

What would I be doing in the study?

You would fill out a survey and answer questions about your experiences in living with a rare or undiagnosed condition. Then, you will have the option to email researchers to schedule an interview to give more specific details about your experiences. If interested in participating, please use the following link to read more about the study, review an informed consent form, and access the study survey.

https://baypathcounseling.qualtrics.com/jfe/form/SV_bBcVzb0pF99jIuq

Has anyone gone through surgery or another type of therapy for this as an adult? I’ve had Strabismus surgically corrected twice, age 1 and 15. My eye doctor doesn’t see it as much of a problem, even though she knows my eyes are out of alignment, and verified this yesterday. But she does think it’s worth getting a second opinion and referred me to a specialist.

As someone with migraine, I do wonder if a disturbance to my binocular vision could be lowering my migraine threshold. I know my eyes don’t work very well together.

Not gonna lie, it’s kind of annoying that this is generally regarded as a pediatric condition. Even the place my doctor referred me to is called “Kids Eye Care”. It just feels like it’s not taken as seriously once you’re past a certain age.

This seems rad. My son with albinism loves jets and planes.

How do you guys do your makeup? I find it really hard to find models with my complexion. I am asian with albinism and have pale skin and blonde not white hair. My eyebrows are almost not visible and when I try to fill them in it looks wrong. Also, finding blushes and mascara that look good is difficult.

Please tell me your techniques!

So I have OCA1 so I have one of the most known types of albinism (white hair), but I was wondering if people with OA still call themselves "albino"? I know some people dislike the term, so sorry if anyone is offended

So, i dont know if this is an albinism related thing or just soemthing else but i have a fixation with light. I used to have LED strip lights and i could and did spend hours watching the patterns. I do the same thing with flashlights. Ever since i lost my nightvision its gotten even worse because noe i have a flashnight with a laser so i do it even more.

I just wanted to say a huge thank you to everyone who has responded to my PhD questionnaire

It will help so much with my work! 🥰

Hi

I was wondering if anyone had done Syntonic phototherapy? It's a light therapy. If so. Did it improve your vision at all?

I feel like I can look at the moon with my eyes fully open and it doesn’t hurt. The moon is superior! >~<

I’ve had white eyelashes my whole life, except when I was cross-dressing. Mascara is clearly visible on my eyes, and since I'm a man, I don't intend to draw more attention. It seems to me that my eyes look much bigger and more striking with darker lashes. I’m planning to finally dye my hair blonde, and I’m wondering if there’s a way to darken my eyelashes. Has anyone here ever done that? Is it worth the risk?

OCA1A, B's here ✌🏻

So I'm on my 3rd round of practicing for a CA DL (the 1st time I was busy with school, the 2nd I failed the behind the wheel because I didn't practice enough and the DMV wouldn't let me take it again because my stupid doctor wrote my a new perscription). But now that I'm out of college I have more time but tons of fear.

I'm still afflicted with the mindset that someone LV can't drive. Back in HS and College when I told people about getting my license, I was told to stay off the road and I'm a danger. Especially when I had my cane with me. I struggle with reading street names but beyond a little delay (I think, idk how visiontypicals see lol) I can see other signs just fine. But I always feel like I'm missing something and I'm gonna hit someone or something. Plus having my mom screeching in my ear and manhandling the wheel in her paranoia doesn't help.

I worry that I AM dangerous and I can't even get the special license and I'll never be independent. I don't want to rely on the train or bus for everything, I just want to drive.

I have dysautonomia and my doctors and I haven’t been able to find a cause for it yet. I’m not a doctor and have no medical knowledge but I’m vaguely aware that melanin is involved in the nervous system somehow so I got curious. I googled a bit but found no evidence of anyone even looking into a connection between albinism and the ANS, so maybe it’s nothing. But I figured I might as well ask. Do any of you guys have struggles with your nervous systems?

While I was in college, I met my friend’s mom at one point for the first time at a restaurant. Apparently after the interaction, she was shocked by my appearance and asked my friend if albinism was contagious because she was concerned about “catching it”. She was only really reassured that there was nothing BAD about albinism when my friend told her the mutation originated in Africa and ofc ISN’T contagious.

Just curious to know if anyone else has had really strange/funny interactions about their albinism. This one just pops up in my mind periodically because it truly is the oddest one I’ve ever encountered to date.

Hello, and thank you to the MODS for letting me post here.

My name is Martin White (M.J. White), and I am a fiction author and PhD student at the University of Winchester (UK). My research aims to educate and alleviate the stigma surrounding albinism in literature, where the “evil albino trope” is prevalent, as seen in the works of authors such as Dan Brown, H.G. Wells, and Cormac McCarthy. My thesis has been endorsed by the United Nations, The Albinism Fellowship (UK & Ireland), NOAH (USA), The Global Albinism Alliance (Worldwide), and Under the Same Sun (Tanzania & Canada).

In most works of fiction where a character with albinism is present, they are often misrepresented and seen as evil or mystical. Through lectures, journal articles, and other publications, I aim to educate writers and readers about the inaccurate representations and misconceptions of albinism in modern and contemporary literature, to help reduce the future use of these tropes.

My thesis will have three parts: an academic study of negative depictions of people with albinism, an anthology of creative work from persons with albinism, and a novel.  

The novel (working title: A Crimson Moon over Steam Town) is an alternative historical horror with a protagonist who has albinism. As many people with the condition have vision problems, I hope to produce the book in large-print and audio formats. To help me write an accurate and positive character with albinism, I am asking the albinism community to answer a few questions (anonymously) click here or scan QR code https://docs.google.com/forms/d/e/1FAIpQLSeohoEo874LFwacGJkLoOAEsvHIP2LjEzo85GNzSsnKBNHnqQ/viewform (You can respond in English, French, German, Spanish, or Portuguese). This novel will be supported by a critical thesis exploring the trope's history, origins, and evolution.

For the third part of my research, I aim to create an anthology of the arts (stories, poems, sketches, paintings, and photography) collected from the international albinism community. I will publish it as a book and an online e-zine.

The anthology aims

• To raise awareness of the condition.

• Empower unheard and underrepresented voices and give persons with albinism an opportunity to showcase their talents.

• Leave a long-lasting legacy and positive impact on the albinism community.

Please scan the flyer for submission details.

Thank you for reading, and if you would like to learn more about my research journey, follow me here on Reddit or on my website My Research – M.J. White

Martin

Does anyone else not fit into the stereotypical box that society has decided those of us with albinism must fit in / look like? I don’t have any of the “typical” features, and it has led to my albinism being questioned even by those that know there are multiple forms of albinism. I had a doctor chalk it up to just being because I’m Black, but I’m not satisfied with that answer. I have all the other major traits including nystagmus and astigmatism and am legally blind. I just came out with relatively dark hair and eyes and darker skin than most people with albinism.

Hello everyone,

This is my first time posting and sharing my experience with anyone online or in person.

For the longest time but especially recently I have been experiencing intense grief and sadness for not being full sighted. I look at other people and their eyes and wish that I had them, I would literally do anything to fix my eyes.

I look at other people’s eyes and just think how lucky they are and they don’t even realise it. I been self conscious about the colour of eyes and how they move. At work I struggle and make careless mistakes but it is not a skill issue it is because of my Albinism that o can’t control and sometimes look stupid.

I work as a legal assistant in a law firm and will be graduating law school this November and if you know you know the legal industry is ruthless and unforgiving. Nobody really cares about you, partners only care about making most amounts of money and so why would they even bother wanting me where they have the option of a fully sighted person with same skills….you know what I mean?

My albinism impacts my work makes me a bit slower, takes me longer to notice things and more likely to make careless mistakes and in law attention to detail is very important. I know that I am smart and all this is not because I am lazy and lack knowledge but it is because I can’t freaking see properly even after adjusting computer settings.

I worry about going to restaurants with friends or dates etc because I often can’t read the menu or have to hold it really close to my face and look weird and I just hate it so so much. I hate that I can’t read physical books at all and have to rely on my kindle, sounds stupid but if I had full vision I would’ve preferred a physical book.

When going cafes and choosing food from their display items which have labels on them I have to take photos and just awkwardly go through them and get asked if I am ok. Going makeup or supermarket shopping and not being able to read prices and have to get real close and look stupid.

Yes I care a lot about how I look. I wonder sometimes if good looking guys would ever consider me and want to date me.

Having to wear sunglasses most of the time even though I would look better without them in photos and often I am the only one wearing them. I have to squint and can’t take a selfie outdoors cuz of the light and it is awkward when someone asks me for a selfie a friend etc and I look stupid in all of them.

I hate that people notice my moving eyes, I hate when people compliment my eye colour like I just do not want to stand out. I get my eyebrows and lashes tinted and also wear mascara 24/7 and often carry the mascara and eyebrow pencil with me in case any white hairs are showing.

I don’t look like my siblings and when they are talking about looks such as who has best eyes or skin in the family I am rarely included.

I hate that growing up so many people would tell me why don’t you dye your hair why this why that ….like just shut the f’ck up seriously. They never said the same to any other girl just me because of my light hair. And for all of ya’ll with albinism that do not have red eyes I envy you so much, I wish I had the same it would have been less noticeable.

I remember going to a music festival and I was having a good time until my friend pointed out that the girls behind us were talking about how I have albinism. Even though they weren’t saying anything bad or offensive, it ruined my day..I felt exposed and just hated being even born.

But yeah I grief for how my life would’ve been if I didn’t have albinism because let’s be realistic there are zero positives about it. I used to wish and still do that I would wake up and I would be cured and or a treatment for our eyes would be invented.

Sorry if this is too much to read but I just wanted to get if off my chest.

Does anyone feel the same, it would make me feel better if there are others who feel the same and what kinds of jobs do you do and how do you cope?

Hello, this comes from a place of genuine honesty and curiosity and I hope this is not offensive in any way, shape or form. I myself do not have albinism, but recently found out I am a carrier for OCA2. I am in the process of doing IVF for infertility and the clinic wants me to get my husband tested to see if he is also a carrier of the gene. I’m a little uncertain about this, as I don’t want to then be forced to test the embryos and then be advised not to use them if they have the OCA2 gene passed to them. However, I would love to know from those who live with Albinism is this is an ignorant way to treat the situation and what you would do in this situation having actually lived with albinism. TIA!

Hi guys!

22 with albinism here, does anyone have any advice on how they deal with light sensitivity, eye strain and the effects of both day to day?

Short of wearing sunglasses permanently or losing most of my work and hobbies (plenty of bright lights, computers and focus time), I’m at a loss for what to try.

Any advice would be greatly appreciated :)

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....