What is Albinism? From Someone With Albinism

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  • Опубликовано: 28 дек 2024

Комментарии • 117

  • @depocrew2nd237
    @depocrew2nd237 Год назад +97

    I’m currently 11 and I have albinism I have nystagmus and I’m legally blind. I do use magnification tools at school. I do learn braille. I have been told that when I’m older I won’t be able to drive. Thank you for the video Ik it was a year ago but it has a lot of good information about albinism!

    • @UnsightlyOpinions
      @UnsightlyOpinions  Год назад +12

      Always happy to make the acquaintance of a fellow PWA. Within you the best of luck in school. While it is likely true that you won't be able to drive if you are legally blind, self-driving cars may be easy to come by when you are looking to get your first car, so I'll cross my fingers for both of us to be able to drive soon. :)

    • @depocrew2nd237
      @depocrew2nd237 Год назад +3

      @@UnsightlyOpinions tysm for such a sweet reply! I wish you the best luck:)

    • @RKingis
      @RKingis Год назад +3

      That's pretty awesome you're learning braille, and in the future, you could be a braillest.
      Do you have, or use a cane? I've learned to appreciate mine, because I don't have to watch my feet.

    • @woodchipgardens9084
      @woodchipgardens9084 Год назад

      So African Albinos can have red hair and brown eyes, then are Europeans with red hair and brown eyes Albino also or No?

    • @Seebee19
      @Seebee19 Месяц назад

      @@UnsightlyOpinionshow is he gonna read this he is blind

  • @emerie4144
    @emerie4144 3 года назад +46

    I really enjoyed this informative video! Since, I'm writing a graphic novel story with a character with oculocutaneous albinism, I've been doing a lot of research to do justice in representing albinism accurately. I've been watching your videos to help with his character development. Keep it up, Tamara! ♥

    • @lawrencelekgetho371
      @lawrencelekgetho371 Год назад +1

      Me too

    • @HMMC101
      @HMMC101 9 месяцев назад +2

      What is the name of your graphic novel??

    • @emerie4144
      @emerie4144 9 месяцев назад +4

      @@HMMC101 It's name isn't set in stone, but for now it's "The Backstage". Not very creative, but it deals with the day to day lives of characters with the overall theme of how people present themselves at work and college vs more personal relationships with family and friends (stage self vs backstage self). It's still not a fully fledged project, but I'm working on it!

    • @HMMC101
      @HMMC101 9 месяцев назад +2

      @@emerie4144 will you come back and update us on this comment when you finish it (no rush or pressure!). I would love to read your work. I love graphic novels and I’d love to learn from the information in this one!! I wish you luck! Keep doing the great work! You’re doing great!!!

    • @emerie4144
      @emerie4144 9 месяцев назад +2

      @@HMMC101 Thank you so much! 🥰 Yea I can try my very best to update on progress, though it may take a long time. I'll save this video. Glad someone is interested!

  • @Diane-xf7xg
    @Diane-xf7xg Год назад +31

    My mom is a albino and so is 5 of her siblings she is so gifted and so are her brothers and sister she cannot see 90% blind but can draw , paint sculp anything and draw you perfect its amazing all of her siblings have a gift her mom always said God took something from them but gave them back these gifts

  • @RKingis
    @RKingis Год назад +5

    I love your analogy of a CRT vs an HDTV. I've started saying it's like putting a VGA camera in the lastest iPhone.

  • @jovinjoy4005
    @jovinjoy4005 8 месяцев назад +3

    i was trying to study albinism for my test and i didnt really understand much but hearing it from someone who has it made me understand it much more since i have something to relate it to. thank you so much for this video and its quality of making

  • @ljbertini713
    @ljbertini713 3 года назад +8

    This is very informative, thank you!

  • @turbinexman
    @turbinexman 11 месяцев назад +2

    I have enjoyed your videos immensely!! They have been very informative and enlightening!! You are doing a great service to inform the RUclips community, about Albinism!! "Big Hugs" to you!!

  • @amyhull754
    @amyhull754 8 месяцев назад +3

    This was SO interesting! Thank you!

  • @BlindBabeBeth
    @BlindBabeBeth 3 года назад +6

    This was incredibly informative!

    • @UnsightlyOpinions
      @UnsightlyOpinions  3 года назад +1

      Thanks so much! I’m glad you found it educational. :)

  • @bamablind9916
    @bamablind9916 3 года назад +10

    Hello Tamara, this was an excellent informative video and quite concise for the amount of information you presented. Having had classmates and acquaintances and coworkers with albinism, I have often wondered if there is a correlation with albinism and hi intellectual functioning. Each and every person who I no with albinism is A high achiever with high verbal skills despite the visual spectrum that they all experience differently. Just something I have wondered about. I wish your videos were around when I consulted parents regarding their children with ocular albinism. This is a great resource video, great content! Love, Beverly

    • @UnsightlyOpinions
      @UnsightlyOpinions  3 года назад +4

      Thanks so much Beverly! Interesting take! Funnily enough, all of the folks with albinism I've met have matched the same description of high achieving, type A people. I'm sure there's exceptions but a very interesting coincidence or even genetic predisposition.

  • @HydraCoffee42-wj5ir
    @HydraCoffee42-wj5ir Месяц назад

    Thank you! So informative!

  • @dennishadley9151
    @dennishadley9151 2 года назад +5

    Hey Tamera.you continue to inspire us with your videos. . I Don’t know if you are familiar with 2 recording. Artists who have albinism No. 1 is King Yellowman who hales from Jamaica. He is dubbed king of Dancehall music His story and his legend are inspiring for people who face huge obstacles in life like blindness albinism, skin cancer and disfigurement .
    No. 2 is Johnny Winter who was a celebrated blues guitarist and vocalist .
    Love your work my friend
    Peace

    • @UnsightlyOpinions
      @UnsightlyOpinions  2 года назад +3

      I was familiar with both. Amazing they accomplished so much. :)

  • @glitchy_magical7097
    @glitchy_magical7097 Год назад +6

    I’m making a comic where one of the characters has albinism! Just wondering, Is there anything I should avoid that could be insensitive? Also I love your outfit omg :0

  • @WosilaOkuleye
    @WosilaOkuleye 26 дней назад

    Thanks for detailed explanation

  • @ashantifernandez2230
    @ashantifernandez2230 Год назад

    Hello Tamara thank you so much for this information I learned a lot about albinism that I didn’t even knew about and this will help a lot with a college project that I’m doing in class right now

  • @afraababirye
    @afraababirye 8 месяцев назад +1

    amazing video thanks!🙂

  • @metalenvyer
    @metalenvyer Год назад +2

    Hi Tamara, love your explanation, there's two famous musicians that have albinism. Their names are Edgar and Johnny Winter both are great artist, but Johnny passed away few years ago. So, what are the odds of there being two brothers that have the same genetic traits. There are some believes at Noah in the bible had albinism. The Egyptians drew a picture on papyrus of his three sons. I think you will find it very interesting because you will see what I mean if you find the right information.

  • @claudinamonteiro5854
    @claudinamonteiro5854 Год назад

    Thank you soooooo much for the video!! It helped me a lot with my bio essay for school 🙏🏼🙏🏼🙏🏼
    You're a life saver 💖✨

  • @susangirardi3655
    @susangirardi3655 6 месяцев назад +1

    Great video. Thanks.

  • @Prissy_Pynk_Nubian
    @Prissy_Pynk_Nubian Год назад +1

    Thank you so much!!!!

  • @ALACGltd
    @ALACGltd 4 месяца назад

    Thank you very much for sharing

  • @carminevinci3579
    @carminevinci3579 6 месяцев назад

    Ik this is 2 years ago but this video is so good :) !

  • @theWendigo1928
    @theWendigo1928 4 месяца назад

    I never thought in my life albinism can have such medical problems. Mainly with vision, though I will say I am a bit glad it nothing to the extreme (or at least what you provided here for me to learn) As someone with autsim I know some other people with autsim disability can drastically affect their behavior to where they have a child like mind set and I know a worker at my work place who has a greater autsim disability then mine. Though not to side track, I always thought with albinism is just losing pegnment color, though I never thought there will be different with each one aswell, really glad I came here to learn a bit and some very interesting things about albno people.

  • @houdini72
    @houdini72 3 года назад

    Hey Tamara, Harley here. I agree with what Beverly says; excellent video! Also, FYI, the link to your Discord is expired! Anyway, all the best to you and yours.

    • @UnsightlyOpinions
      @UnsightlyOpinions  3 года назад +1

      Hi Harley! Thanks so much. I didn't realize it expired after 7 days... I'm going to try to fix that up right away!

  • @paleface2415
    @paleface2415 2 года назад +2

    Im very pale and have light brown hair but I’m animic not albino but my friends keep saying I’m albino

  • @tudormiller887
    @tudormiller887 Год назад

    Watching from London UK❤

  • @itswolfgmd8212
    @itswolfgmd8212 2 года назад

    Thanks! Nice hair!

  • @achromatic03
    @achromatic03 2 года назад +2

    Kindred spirit here with a beauty question…what is your hair care routine? Mine always gets like yellowish and dull before it even gets to my shoulders. Yours seems like a consistent white from root to tip! I just feel like it looks weird when I do half ponytails and stuff. Just curious if you have any advice. Sometimes I just want to just dye the ends!

    • @UnsightlyOpinions
      @UnsightlyOpinions  2 года назад +4

      Always happy to meet a fellow PWA! Purple shampoo does wonders. Work in in at the ends the the scalp at the very end once a week - not every wash - and it should even out the brassy colours. Also avoid shampoos/conditioners with sulphites I’ve noticed those yellow my hair a lot more! :)

    • @achromatic03
      @achromatic03 2 года назад

      @@UnsightlyOpinionsok, thank you, I'll check my purple stuff for sulfites.. Sounds like I'm overusing it!

    • @RKingis
      @RKingis Год назад

      ​@@achromatic03Matrix brand has a great purple shampoo.

  • @auroranebulosa
    @auroranebulosa 3 года назад +1

    Hi. Visually impaired non-albino here. I had always been told that people with albinism often have “pink eyes” and I assumed that meant that their irises were pink or reddish, but you never mentioned this when talking about eye color. Am I confused. in some way here?

    • @UnsightlyOpinions
      @UnsightlyOpinions  3 года назад +3

      No you are not confused! It's one of the most common misconceptions about albinism! Other animals like mice and rats have red eyes when they have albinism, but most humans with albinism do not. My eyes can look pink-ish in harsh lighting conditions or in the flash of a camera but that isn't because my eyes are red, it's because the pink of my retinas are reflecting through my blue irises. Folks can also have aniridia which means that they are born without irises and the eyes will look more pink/red because of the same retina reflecting back issue, but that isn't very common even amongst folks with ablinism. It's a separate condition.

  • @macflod
    @macflod 11 месяцев назад

    Hi Tamara. This is a great video, thanks for making it .
    I just wanted to ask, do you know if people experience a form of Racism or discrimination for having albinism ?
    Also, are there any appropriate or inappropriate ways to talk about Albinism? Like i have heard Albinism or Albino? Are these terms ok or Rude?
    I understand the genetic side of this after listening to your video, its a recessive gene. I had no idea that it was as common as 1-20k for a form of albinism.

    • @UnsightlyOpinions
      @UnsightlyOpinions  11 месяцев назад

      Thank you! Great questions. There is most certainly persecution in different parts of the world and people with albinism are still hunted and killed in countries like Tanzania. There have been instances in my life where albinism is the butt of a joke or people have discriminated against me because of that, but I see that more as disability discrimination than albinism specific.
      I think the best rule of thumb is only refer to someone's medical condition if it is necessary for the context of a conversation. and most folks in the albinism community prefer person with albinism (PWA) rather than albino. It's complex but gets into the person first/identity first language debate a little bit.

    • @macflod
      @macflod 11 месяцев назад

      @@UnsightlyOpinions hey thanks for the reply!
      Ahh im sorry you got discriminated against for either way.
      although j wish im wrong on this, sadly i can’t help but think if we all had the same amount of melanin in our skin. Human nature as it is would lead to racism and discrimination based on hair colour or eye colour.
      Ah yeah, i did know in some African countries that there was serous persecution of people with Albanisim. I used to live in a city and there was a neighbour who had come here (UK) from Africa because of persecution due to his albinism. I would talk to him waiting for the bus some mornings, He never said which country he was from exactly. It was so long ago now I can’t remember much else from our conversations.
      Thank you for clarifying about the term to use and i think i understand, its about defining the person in front of you as a person and not them as a person with albanism or say a noticeable genetic difference. I think i understand it and yeah in most context of conversation it doesn’t need to be mentioned.

  • @johnerwin9024
    @johnerwin9024 8 месяцев назад

    To me more cool liking than anything else; kinda an ethereal vibe✔️

  • @esterester7853
    @esterester7853 8 месяцев назад

    you are an angel of god brought to earth ❤😍

  • @jazzminelizabeth
    @jazzminelizabeth 3 года назад

    Thank you!

  • @angelojohnnys7246
    @angelojohnnys7246 Год назад

    Ty❤️

  • @adilchohan7516
    @adilchohan7516 3 года назад

    I Requested you to make a video of the products(Hair & Skin) you use for yourself.

    • @UnsightlyOpinions
      @UnsightlyOpinions  3 года назад

      I have a few other videos in the works at the moment, but I'll try to do a video on products soon. The shampoo I use is this one here:
      amzn.to/3vvc80o

  • @HeatherRausch-v7q
    @HeatherRausch-v7q Год назад

    I have albinism and can't drive. It certainly makes life harder. Even crossing the crosswalk people think I can see them waving through the windshield, but I can't.

    • @UnsightlyOpinions
      @UnsightlyOpinions  11 месяцев назад

      It can be a challenge for sure. Not being able to drive is probably in the top 5 most annoying things about being blind for sure!

  • @genkigirl4859
    @genkigirl4859 3 месяца назад

    I’m not sure what I have nobody ever diagnosed me but I’m a twin and I have naturally bleached looking hair meanwhile my identical sister has brown hair,im pretty much hairless body wise just kinda fuzzy,our eyes are the same weird blue though.
    Also although im not really that pale I do get sunburnt very easily and have to use my big umbrella on sunny days while outside🤷‍♀️

  • @ZHkylie
    @ZHkylie 11 месяцев назад

    Aww I wanna have albinism so bad, People who have albinism are so gifted

  • @janiskanal5477
    @janiskanal5477 3 года назад +1

    I’m very photofibic must I have albinism to have extreme light sensitive?

    • @UnsightlyOpinions
      @UnsightlyOpinions  3 года назад +1

      Many different eye disorders can cause photophobia and light sensitivity not just albinism! Nystagmus like your other post says can contribute to the photophobia you experience. But if you are concerned, chat with your ophthalmologist or optometrist about it. :)

    • @parentsof2familyforever747
      @parentsof2familyforever747 10 месяцев назад

      Doesn't make you albino. My aunt albino. My son sensitive to lights cause he has axenfeld rieger symdrome

  • @Comrade_Dyatolov
    @Comrade_Dyatolov Месяц назад

    Is it possible for people with albinism to have normal vision?

    • @UnsightlyOpinions
      @UnsightlyOpinions  Месяц назад

      Not to my knowledge, but some have a lot better vision than I ever had.

  • @peakyboy410
    @peakyboy410 Год назад

    I respect fully think from studies hundreds thousands years ago that there was full tribes of albinoe that was attacked due to only coming out at night and natives would take advantage and would burn them in there caves not knowing they were humans with the genetics

  • @seanbrown2120
    @seanbrown2120 8 месяцев назад +1

    I âm 37 years old and have albinism I was born with I plod along with life I do get funny looks because of the way I look but I think to my self sod the people who give me funny looks I don’t care

  • @peterconnel7495
    @peterconnel7495 2 года назад +1

    That isn't entirely true about just blonde or red hair meaning you don't have some form of albinism,it maybe relegated only to the hair. If I'm not mistaken,that's true for the Australian Aborigines and some Melanesians,though they aren't the only dark skin people with light hair.

    • @UnsightlyOpinions
      @UnsightlyOpinions  2 года назад

      What I was trying to explain is that you don’t need perfectly white hair or skin or light coloured eyes to have albinism because of the many types and genetic mutations associated with it. Some may produce more pigment than others. I was trying to clarify that just because you have light blond hair doesn’t mean you have albinism either. You need the other features associated with albinism like nystagmus, vision loss, foveal hypoplasia, etc. there are also forms of albinism that only affect eyes and don’t affect skin or hair pigmentation at all.

    • @peterconnel7495
      @peterconnel7495 2 года назад

      @@UnsightlyOpinions No. I'm suggesting there maybe folks who have a hint of albinism but different metrics doesn't make them technically a person with albinism. I had to refresh my understanding of it,but the blondism in the Australian Aborigines and Melanesians is caused by the Tyrp1 gene,with other candidate genes does cause albinism.

  • @janiskanal5477
    @janiskanal5477 3 года назад

    I have optic nerve atrofi and nystagmus

  • @Alberto-mq3jm
    @Alberto-mq3jm 2 года назад

    The real question is, can people with albinism develop the Byakugan if they try hard enough? Hehe no offense, just joking around, this topic is quite interesting, I haven't found a video as informative as this one yet

    • @UnsightlyOpinions
      @UnsightlyOpinions  2 года назад +2

      I wish haha. If only I had all seeing eye or daredevil like reflexes. It would make life a lot easier. :) glad you enjoyed the video.

  • @Axile929
    @Axile929 Год назад

    Oh my Goodness 😢 I never knew about them albinoooooo people human species they are such a beautiful ❤❤❤

  • @woodchipgardens9084
    @woodchipgardens9084 Год назад

    So African Albinos can have red hair and brown eyes, then are Europeans with red hair and brown eyes Albino also or No?

    • @starlightmonbebe
      @starlightmonbebe Год назад

      As an African American Albino myself, unless the European person has other traits that were described in the video like nystagmus or photophobia, they are not an albino just because they have red hair or brown eyes. We are born this way due to genetics. I rarely comment on videos but I’m hoping that you were genuinely asking the question and not being insensitive.

    • @woodchipgardens9084
      @woodchipgardens9084 Год назад

      @@starlightmonbebe I think Albinism has everything to do with Europeans turning pale, it is something that just happens not necessarily evolutionary, Albinos stay out of the Sun and live over 70 years without Sun exposure so why would Vitamin D from the Sun be a requirment.

    • @starlightmonbebe
      @starlightmonbebe Год назад

      @@woodchipgardens9084 Again I myself am not European and an albino. I inherited a gene from both parents that was, lack of a better word had a mutation that lead to me being born with albinism. It runs in my family and none of my family are of European descent. I have red hair and brown eyes. Both of my parents are African American. I also “look white.” If you are genuinely curious about albinism, may I suggest you look up some information in medical journals or speak to medical professionals who specialize in treatment people with albinism. Your previous comments are very rude and highly offensive.

    • @woodchipgardens9084
      @woodchipgardens9084 Год назад

      @@starlightmonbebe a lot of offensive people in the world isn't there, look up Lazarus Chigwandali and Salif Keita it might cheer you up.

    • @starlightmonbebe
      @starlightmonbebe Год назад +1

      I’m good thanks. This will be my last comment. You don’t seem to be genuinely interested in albinism and just interested in hot takes and tomfoolery. I’ve spent all 51 years of my life dealing with my albinism. As a mother, I’ve raised my children to be aware of my condition and how to assist me as I age. There’s a plethora of information about albinism out there if you’re willing to look and genuinely learn. Have a nice day.

  • @mikescala
    @mikescala 9 месяцев назад

    What up to all the Targaryens out there

  • @parentsof2familyforever747
    @parentsof2familyforever747 10 месяцев назад +1

    My aunt is albino

  • @pablo-oq8is
    @pablo-oq8is 2 года назад

    I have a question what happens if a albino person is injected melenin does it help skin and eyes visión like melanotan 2 or Nitisinone ?

    • @UnsightlyOpinions
      @UnsightlyOpinions  2 года назад +2

      It really doesn’t help because our bodies can’t synthesize or metabolize it in cells.

  • @mountainben88
    @mountainben88 9 дней назад

    I know of a group that sometimes produces white hair, no evidence of albinism of hair or skin genetics, a rare production of a white hair trait. less then 1 percent of the towns population produces the white hair . some geneticists claim their evidence of a unknown species in the DNA with other geneticists disclaiming it. The locals population have issues with producing that shade of hair, not even a blonde population, but a brown haired population. The local population makes fun of them and call them snow elves. Some end up dying their hair. The locals most likely just have weird genetics. When the snow elves marry, the children are normally brown haired. The like the rest of the population, their skin tans, it just takes plenty of exposure to sunlight. the population has very pale skin, close to paper white when out of the sun to long. The locals attempt to get them to date each others. The locals seem to have this strong love of matching pairs. The nearby Christians some times accuse them of idol worship. Some people of one of the nearby towns, claimed that Christian are just jealous of them being overflowing with MR ugly. . The locals are more attractive then Christians and are able to manage and navigate marriage life better and this includes their atheist population, who are normally already married by 19. Their snow elves are even considered to be attractive to outsiders, its because of the make up and hair combine with a white gown making them look almost mystical , like a pretty elf or some kind of ghost flowing across the room. The locals have decent facial and body structures. One of the local theories is that once ever long while, a gene that is not normally dominate becomes dominate and the child is born with white hair like a polar bear or white wolf. The tribe absorbed is believe to come from a very frozen climate and to have good cold tolerances. the locals white haired also seem to have higher then normal tolerances for cold water and low temperatures compared to the locals who have higher tolerances compared to certain types of Europeans, blondes also seem to have some people with higher tolerances for cold.

  • @jollygoodgordon5580
    @jollygoodgordon5580 Год назад +1

    so are albino's their own race, is that fair to think?

    • @UnsightlyOpinions
      @UnsightlyOpinions  Год назад +3

      I don’t think that’s a fair conclusion. People with albinism can come from any country and ethnic background. They will still share every other physical, and social feature of their heritage just not the melanin, so no I would not consider albinism a race.

    • @jollygoodgordon5580
      @jollygoodgordon5580 Год назад

      @@UnsightlyOpinions I got ya. But so… to what race do they belong to?

    • @Co-ordinator
      @Co-ordinator 2 месяца назад

      ​@@jollygoodgordon5580good ragebait

  • @polliehollie
    @polliehollie 10 месяцев назад

    I have albinism andHPS !!

    • @UnsightlyOpinions
      @UnsightlyOpinions  9 месяцев назад

      They wondered if I had HPS for the longest time due to blood issues. Very cool to meet a fellow PWA :)

  • @KyleGaetsosiwe
    @KyleGaetsosiwe Месяц назад

    Hi what happen to albino when they die I have never see an albino fenural

  • @user-vt9kq7gl2l
    @user-vt9kq7gl2l 3 года назад

    احب هاي الحاله🥺🇮🇶

  • @scooter433
    @scooter433 3 дня назад

    I think you're beautiful.

  • @_abubkr_70
    @_abubkr_70 8 месяцев назад

    Use some images for explane

  • @rcvtvtvtvy
    @rcvtvtvtvy 2 месяца назад

    Avg British

  • @thehappygoluckyone7229
    @thehappygoluckyone7229 3 месяца назад

    I would hate to have albinism. It just looks wrong, I’m sorry.

    • @Positivekitten
      @Positivekitten Месяц назад

      Wow, did you wake up one morning and decide “I think I’m going to be as rude as possible today!”?

  • @esterester7853
    @esterester7853 8 месяцев назад

    Try not to get jealous 🤡🤡🤡