Questions | Answers |
---|---|
Hey, I don't have albinism! I'm just really, really pale. People always ask "are you, like, albino???" I know people with albinism avoid the sun like the plague, but why? What happens if you're out in the sun too long? I just get a nasty sunburn and go back to being pale at the worst. | Same thing. After about 45 minutes I get a nasty sunburn that itches, hurts, and then peels and eventually I go back to being pale again. The problem, aside from a sunburn looking unsightly and hurting like hell, is the damage. A sunburn is a sign of UV radiation damage to the skin. Our body is really good at repairing damaged DNA, but the process is a lot like patching ripped jeans. It works, but it's not perfect—the jeans will never look or feel brand new again. Eventually, constant DNA damage leads to aging of the skin, and leads to a much much higher increase in the likelihood of developing skin cancer. It sounds like the scare tactics the media pumps out all the time, but it's true. |
Now granted I get sunburned every now and then, twice a year or so, and I tend not to care. But the risk for developing skin cancer is very very real, and I know someone with albinism in her late 50's that has had to have several different moles and patches removed. Damage from UV rays, potentially cancerous. Again, the risk is very real. | |
Hey Alex, I have an 10 year old with Albinism- also named Alex, my question is, How do you keep your hair white rather then that brassy yellow that albino hair can get? | It's actually kinda funny, I describe my hair as white but most doctors describe it as light blonde :P Lighting also plays a key role. |
Personally, I don't do anything. I just wash it and use regular shampoo. I have heard of people with albinism who have their hair turn green because of something in the water or some of the products they use, but hair colour is largely derived by the amount of pigment you produce. | |
I've never actually inquired as to whether or not people with albinism develop more or less pigment as they get older. There are various drugs that improve pigmentation in albinism, but whether or not it happens naturally is a good question. | |
I'm meeting with an albinism expert next week. I'lll ask and get back to you :) | |
What comes with being albino? What r positives and negatives? Biological and emotional as well. | Basically, lack of skin and eye pigmentation. Easy sunburning and really reduced visual acuity. Emotionally there can sometimes be social stigma and bullying, everyone has a different experience. |
I can't think of too many positives. I get to board a plane before everyone else, have a handicapped parking placard, and... do this AmA? It's a broad question and positives are kinda hard to think about right now. It's less an issue of what's good and what's bad and more about just making the best of the situation. | |
Man parking in handicap spots beats all negatives. Thanks for the ama man. Keep a positive mind, u seem brilliant dude. | Not only can you park in those spots, you can park in any metered parking spot completely free. It took us a long time to find that out, but it makes parking in Los Angeles a lot easier (and cheaper). |
Positive: epic Venture Bros 'Pete White' cosplay. | One of my friends did an article on Halloween costume ideas using albinism. Of course every girl with albinism and their mother was Elsa this year, but previously: Bob Ross (the albino version), Col. Sanders, Marilyn Monroe, etc. |
Being visually impaired, can you drive a car by yourself? Do you have special sunglasses to wear? | Not myself. I never learned how and even then I never could legally (in all except 13 states). Thankfully, self-driving cars are only about five years away. |
I actually don't wear sunglasses at all :P I should, but they reduce visual acuity further and everything has this odd brown filter on it. I just hate them. | |
Hell, I ask in every post I can. What's your favorite pokemon? | > Who was the first Pokemon? |
> * Bulbasaur. | |
> * Mew. | |
> * Arceus. | |
> * Rhydon. | |
According to the Internet it's all four. My hardcore Pokemon friends are torn between Arceus and Bulbasaur. | |
But to answer your question, my favourite is Pikachu. | |
Bonus stuff because I like talking about Pokemon apparently: A lot of people compare albinism to shiny pokemon. | |
Seriously? That's a hilarious question to ask. Each of those pokemon have a reason to be considered the first. | I'm sure it was a joke question or an attempt to gauge each applicant's thinking style (you picked a certain Pokemon as first because they were first for a certain reason according to your way of thinking). It was just a fun thing to have on there. |
Also, I wouldn't count albinism as shiny. I doubt shiny pokemon have problems being outside in the sunlight. And has more public representation than Powder and characters from shitty comedies. | I think the correlation was more with shiny pokemon being rare like albinism is rare. It's been like 8 years since I've had Pokemon cards, but I always loved the hologram/shiny ones! |
That's the number one thing that the pokemon TCG taught us. If it is shiny, then we'll pay extra money for it lol. I still want to get a full shiny magic deck lol. | I still remember buying those binder sheets for Pokemon cards. I miss my childhood sometimes. |
Do you ever see people look at you longer than they would at anyone else? | Because I'm pretty visually impaired, I usually don't notice people staring from a distance. At places like restaurants or grocery stores, I can usually spot little kids staring for a lot longer (I'm sure adults know to only take casual glances or stare at someone out of the corner of their eye). |
When I catch little kids staring, I stare at them and make the creepiest smile possible. It's pretty fun, but I don't blame them for staring—kids are curious. | |
How is your vision? Do you use a cane or a guide dog, or can you get around OK without one? Can you drive? | 20/400 uncorrected, which is a fancy way of saying what you can see perfectly fine from 400 feet away, I have to be 20 feet away to see the same thing. ELI5: Remember the giant E at the top of the eye chart at the doctor's office? I can't even see that. |
We determined a long time ago that I don't need a guide dog, and canes are just kinda awkward. I have one, and they'd be great for letting other people know you're blind. But all in all I get around fine without one. Sometimes little bumps or... misalignments on sidewalks manage to trip me, but overall I navigate well. | |
I can't drive legally. Every state has a minimum BCVA for driving, and here in Texas it's 20/80. I can only get up to 20/160 with the best possible correction (and squinting!) close, but no cigar. Thankfully, self-driving cars are about 5 years away. | |
Is that because of the albinism? | Yes. We're not sure exactly what components cause all the problems, but they start with eye development in the womb. |
Has you been a bulling victim? (I'm not trying to be racist or something like that) | Not really. You get rude remarks here and there and some teasing here and there, but never anything physical. I know lots of people with albinism who, aside from the occasional teasing, were pretty well respected and accepted. |
However, for all the success stories there are also sad stories. I remember one guy who was physically beat up just for having albinism. Granted this was something like 50 years ago so it was a different time, but it happened. | |
Have you ever considered a holiday to Africa and do you have a good life insurance policy ? | I have. A lot of my coworkers are from Africa and they tell me about how amazing it is. Kenya, South Africa, Ghana, etc. Maybe someday! |
I don't, currently. Maybe my wife can take one out on me before I go, just as a worst case scenario. Since a lot of people don't know about the persecutions in Tanzania, I don't think the life insurance company would call her out on it. | |
That's actually a really brilliant plan! | |
You should read my book, "100 Ways to Make Cash Through the Misuse of the Good Nature of Nice People" :-) | I'd rather make cash by counting cards. It's more fun, you risk getting the shit beat out of you in the back of the casino, and they I can get a movie someday. |
Maybe my wife can take one out on me before I go, just as a worst case scenario. Didn't you say in another comment this? It depends on which state I'm in :P But I'm single without kids. Sorry if I'm confused or whatever but it seems your story is mixed up :S. | I was kidding about the wife, like: That's something an evil wife would do to get rich off the life insurance, at the expense of her husband's life. |
Could they tell when you were first born that you had albinism? I saw your genetic testing paperwork was from last year, just wondering how long it took for everyone to figure it out | They could tell something was wrong the moment I was born considering my parents are very dark skinned, though I'm not sure when they first heard the world albinism. |
The first medical record I have of it is from about 4 months of age where a geneticist made the diagnosis (based of visual inspection, as genetic testing was pretty much nonexistent or super duper expensive back then). | |
A genetic test for OCA type runs like $600 today. | |
Do you take a vitamin D supplement? Or any special supplements or dietary restrictions in general? | Not for vitamin D. It actually takes a very small amount of sun exposure to get your daily dose of vitamin D, smaller than what it would take to sunburn. Sadly, a lot of people with albinism are vitamin D deficient. |
I used to have to take iron pills, completely unrelated to albinism. There are no dietary restrictions or additions that come with the condition. | |
What's typical home life for you? Wife? Kids? Hobbies? | It depends on which state I'm in :P But I'm single without kids. |
In my spare time in California I like to do research, watch Netflix, read books, take long walks (sadly not on the beach), and use Reddit. In my spare time in Texas I like to attend concerts, attend TEDx events, go shopping, see movies, and on occasion go to the zoo. | |
Ah cool! Into any online gaming? | Can Macs handle gaming? :P. |
I've always wanted to do like Fibbage or online Monopoly or something like that. On occasion I'll play online Texas Hold 'Em because why not :P But it's mostly Minecraft and GTA for me, single player on an iPad. | |
A lot of Steam's catalogue works on OSX, and most games are now on Steam. you could always run Crossover for Mac to run the Windows Steam client, or any native Windows files. | I always hear so much about Steam sales, and how people buy lots of games they never play :P. |
The All Slots casino has 75 exciting games for Ghanaian players, including slots (Thunderstruck II, Bars and Stripes), table and card games like roulette and blackjack, and video poker games like Jacks or Better. Deposit options for Ghanaian players include credit cards, NETeller, and also Skrill. Ghana casinos and gambling guide has information such as: A Ghana casino list, poker tournament listing, information on slots, pari-mutuel (greyhounds & horses), Texas Hold'em, and more. Find casino contact information and view photos of every casino in Ghana. There are well over a hundred companies throughout the world that create games for online casinos. Some of the biggest, best-known providers include Microgaming, NetEnt, Play’n Go, Scientific Games, NextGen Gaming, and Evolution Gaming. Most Ghanaian online casinos have games from a mix of providers, not necessarily just the most popular ones. Online Casino Guide. Online gambling in Ghana is completely legal and a number of big international brand casinos accept players from this region. The competition between sites is fierce and during our search for the top online casinos for players from Ghana we came across some enormous bonus offerings, great rewards and huge jackpots. The Best Ghana Online Casinos – The Top 2021 Sites for Ghana Players. When it comes to choosing an online casino in Ghana, we know that our readers are looking for sites that are safe, secure, and of course, fun. In this expert review of Ghana’s top online casinos, we’ve provided recommendations to licensed gambling sites that tick all of The Best Online Casinos in Ghana – Top 3 Legal Operators & Their Bonuses We strive to protect online players from all across the world and help them to have positive gambling experiences. That’s why we have compiled this guide of the Best Online Casinos in Ghana , guiding you through all the top sites, as well as letting you know how to Best Online Casino Sites accepting players from Ghana CasinosAnalyzer.com Only AI Verified Casinos Full Casino Information For PRO Gamblers Best New Casinos for Ghana Players 2020 Best Bonuses for Ghana players up to $5000! Online Casinos available for players from Ghana. MACAU High rollers, luxury casinos and hotels plus a rich heritage make Macau one of the world's premiere gaming destinations.. LAS VEGAS Las Vegas casino resorts have been long known for their entertaining shows, endless casino action and bright lights.. COTAI STRIP Biggest casinos in the world + newest casinos in Macau; Cotai Strip threatens Online Casino In Ghana. Players in Ghana are welcome at some of the web’s top online casinos and can enjoy world class entertainment at their leisure! With online gambling being legal in this West African country there are a plethora of offshore online gaming establishments that accept those players from this region. In Ghana, more and more players are looking to play this game. If you are new to this game, then this is a perfect starting place. thanks, to the online version, which was invented when the online casinos went live. The online version features all the game features and uses the same rules as the original version. There are however a few
[index] [3758] [1922] [7113] [8792] [2847] [2187] [6875] [5729] [723] [5938]
ПОЛУЧАЙ ФРИ СПИН ПО ССЫЛКЕ!!! https://betandwin.best/BUR online casino for real money, online casino testimonials index, online casino usa, online casino ohi... Online Casino Affilgo and Betway - affilgo and betway affilgo and betway is now live in ghana - Duration: 105 seconds. ПОЛУЧАЙ ФРИ СПИН ПО ССЫЛКЕ!!! http://hottopnow.com/BUR play n go online casinos, online casino 5 euro deposit, $5 online casino deposit, online ... This tutorial shows you how to hack online RTG casino's using an auto-clicker and Cheat Engine. The purpose is to basically robot through the play-through re... ПОЛУЧАЙ ФРИ СПИН ПО ССЫЛКЕ!!! http://hottopnow.com/BUR play n go online casinos, online casino uk no deposit, online casino 5 free no deposit ... Coin Operated Mini Arcade Casino Slot Game Machine Mario Wooden Electronic Game Machine with Kenya Afica DesktopSpecifications1 Language: English, french and... Dana White gets banned from the Palms Casino for winning too much money.If you enjoy the video, like, comment and subscribe for more! 2. 1A Mankata Avenue, Airport Residential Area, Accra, Ghana, Price range $278 - $377 Featuring free Wi-Fi access is available in all areas, Villa Monticello Boutique Hotel is located in Accra. ПОЛУЧАЙ ФРИ СПИН ПО ССЫЛКЕ!!! https://betandwin.best/BUR s.a online casinos, gta v online casino car, online casino dice game, nj online casinos, online casi... How To Make Money Online By Watching Videos!eCom Elites 2.0 Is Live! + Mentorship 👉https://ecomelites.com/?sl=wvStart affiliate marketing: 👉 https://savage...
Copyright © 2024 m.bestbetsgame.shop