WHAT IS ALBINISM & WHAT DO I SEE? Oculocutaneous & Ocular Albinism, Crossed Eyes, Lazy Eye, & more

#Albinism #Albino #Vision
What is Albinism? Oculocutaneous Albinism, Ocular Albinism, and Hermansky-Pudlak Syndrome are all discussed in this video. I also answer the million dollar question: "What do I see?"
Check out my blog post on all of these eye conditions here:
albinismupclose.com/why-cant-...
Check out my Introduction video here:
• Dani Marie AUC: The In...
I'm Dani Marie AUC, and I make content about my life with albinism and low vision. I talk about the challenges of being legally blind in everyday situations such as cooking, shopping, traveling, gaming, and more. Join me for equal parts of poking fun at myself and serious conversations. I'm looking forward to this adventure.
Visit my website for more information and resources:
AlbisnimUpClose.com
Follow me on social:
Instagram: @DaniMarieAUC
Twitter: @DaniMarieAUC
Facebook: @AlbinismUpClose
What I Shoot With
Camera: www.amazon.com/Canon-Mirrorle...
Mic: www.amazon.com/Rode-Lightweig...
Light: www.amazon.com/gp/product/B07...

[@lobnahassan]

Very informative and easy to follow video! I can also relate a lot to your journey with hair and photos. Thanks Dani!

[@DaniMarieAUC]

Thanks for coming and for checking it out! 💜

[@TheBlindTreasureHunter]

Thanks for sharing. You did an amazing job explaining everything. Looking forward to more videos. Stay safe and keep happy

[@aprilgoodson694]

Very informative! Looking forward to the next video!

[@smailunde]

Love your video. I guess I´m just like you. You tell it so well I could copy/paste it to my life. I´m all blond, legally blind, can´t get driving license etc... Very informative, well done. Thanks!!!🙂

[@DaniMarieAUC]

I'm so glad to hear it. I knew there were so many others out there with such similar experiences so it helps to hear that!

[@thecat3309]

Same here!! Hello sisters!! 🤩

[@abbyf8863]

I love it! Very polished and put together!

[@DaniMarieAUC]

Thanks, girl! Appreciate that!

[@lornajamison7527]

Thank-you for this informative video. You really have the knack of explaining the condition well. I’m following up on your other resources too.

[@DaniMarieAUC]

Thank you! I hope you find my site and resources page helpful.

[@davidsetyo9365]

Great video and very informative. I came here after watching Unsightly Opinions' channel. I had been known several people with albinism in my life but I never really understood its impact to someone's vision and eyesight. Your video explained a lot of new information related albinism to me and maybe it will be useful someday. Keep up the good work!

[@DaniMarieAUC]

Aw! Thank you so much for coming over to my channel. I really appreciate it. I'm so glad you were able to learn something new from the video as well. In my book, information is always valuable, even if that value isn't immediately obvious.

[@trekkingchica]

Another great video! such good information.

[@DaniMarieAUC]

Thank you! I appreciate you watching!

[@stevefoxyorktheguidedog4350]

Great video. Very informative and I love your relaxed style. Cheers!

[@DaniMarieAUC]

Thanks for stopping by man! I checked out some of your paddle boarding videos a few days ago. Now I really want to learn! It looks so relaxing.

[@stevefoxyorktheguidedog4350]

Dani Marie AUC no worries. I’m glad you liked the stand-up paddle boarding video. It’s definitely a bit of fun. I love it. Have a great day!

[@DaniMarieAUC]

@@stevefoxyorktheguidedog4350 cheers man! You too!

[@ljubog]

Thank you very much! Especially for describing photophobia. My 3yo son has ocular albinism. So maybe we should get him some sunglasses.

[@DaniMarieAUC]

Absolutely. It's one of the easiest things you can do to make him more comfortable. Though, I'm sure getting a kid that young to keep sunglasses on might be a chore. Haha. Hats can help as well!

[@ljubog]

@@DaniMarieAUC Oh, well, if he finds it comfortable, he will keep them on. Tell me this though, please: have you ever come across an idea or theory or experience that the very exposure to sunlight might lessen the sensitivity, or help generate melanin, or something similar...? My son seems ok on the beach, nothing in his behaviour suggests he has photophobia.

[@DaniMarieAUC]

@@ljubog no. Exposure will not lessen photophobia or magically increase melanin production. But we all have varying levels of photophobia. It'll just be important to watch your individual kid to know what their experience is. Just make sure to have anything they may need available. The beach is especially rough because sun and UV reflects off both the water and the sand. Just keep that in mind.

[@heatherdestefano9321]

Fellow PWA here, awesome job!!! I look forward to more videos :)

[@DaniMarieAUC]

Glad you're here! Thanks for checking out my channel! 💜

[@drehernandez8248]

I’m curious to know what is the mascara primer that you use? And is it tinted? I also have been having a hard time finding a mascara that isn’t dark brown or black.

[@DaniMarieAUC]

I use. Mascara primer by Urban Decay. It's called Subversion Lash Primer. It's excellent. It helps to make my lashes stand out but doesn't add any tint.

[@TheoryOfABlindMan]

Very informative, thank you. We have something in common, I too have been called Q-Tip LOL. Seriously though, great vid, great info. Look forward to more knowledge that we just don't hear a lot about. 😎💣

[@DaniMarieAUC]

Thanks man! I so appreciate you checking it out. Gotta get these informative videos out there for sure! They're the first ones I have planned.

[@thecat3309]

I've been called granny a lot as a kid. 😵‍💫

[@thecat3309]

Ha! Do you also have this thing, where when entering a room, like a classroom or in a café with friends, you always try to sit down with your back facing the windows? That's something I always do, and I think must be typical of people with high light sensitivity (or photophobia). And sometimes, this doesn't work because then there is a bright wall reflecting the sunlight. 😅

[@DaniMarieAUC]

Oh yes. I try. It can feel impossible to find a safe spot in some rooms.

[@blindbackpacker2618]

Love the video, well explained :-)

[@DaniMarieAUC]

Thanks man! Happy to see you over here at my channel.

[@blindbackpacker2618]

@@DaniMarieAUC i have a friend with the same condition as yourself. I myself had retinoblastoma at birth & lost my left eye at 6 months old & most of my vision in the other

[@DaniMarieAUC]

I find it so fascinating the variation in the blind and VI community, but so many of us have so much of the same struggle in common. I have enjoyed meeting everyone in the last few weeks so so much.

[@LEXPIX]

Nicely done fellow PWA.

[@DaniMarieAUC]

Hey man! Thanks! Good to see you here!

[@FoxRogers]

Hi! I just got diagnosed yesterday from my eye dr. I'm 41. My hair is henna dyed in that picture. I didn't get taken to the dr a lot as a child and could not go much until I was in my 30s, no insurance. Anyway, I was just always treated I was fussy and sensitive with how I can't be in the sun for more than 10-15 min without burning, and even with sunscreen I get very sick. I get sick in cars without tinted windows. I have all of the eye issues but not the crossing or the fast movements. But your description of the baseball game is exactly how the world is to me. And I can no longer see the moon properly, and there's 3 of everything lol Thank you for sharing! 💗

[@rattlesnake1ful]

I have albinism, but my hair is multi toned. When I was a baby it was blonde, but it has been progressive and now it is 3 toned. Blonde, red, brown. My eyesight? Forget about it… I am blind at night and the sun burns my eyes. My glasses are twice the size of yours 😭😭😭 I believe albinism effects your brain too because most of us have big foreheads/big brains

[@DaniMarieAUC]

Nice to meet you. Albinism is definitely a huge spectrum! We are certainly all very different! And that's okay. And to my knowledge, there is no evidence that albinism affects the brain other than what it does to the optic nerve itself.

[@rattlesnake1ful]

@@DaniMarieAUC I only speak on it affecting our brains in the sense that every albino person I’ve come in contact with is very intelligent. Even you, I can tell from listening to you talk.

[@DaniMarieAUC]

Ohhh. Hahaha. I see. Well thank you for the compliment! 💜