Adults With Albinism

NOAH Chapter in Saint Louis and Surrounding areas

JessicaTraskReagan — Tue, 27 Jul 2010 18:36:37 GMT

Hi Everyone,

I'm new to the Saint Louis area and wondering if there is a local NOAH Chapter in the area. I would like to get involved with the Albinism Community. I would also like to have a chance to network with other adults with Albinism.

Artificial Iris Implant

laetgov — Wed, 30 Jun 2010 15:37:55 GMT

Hi!

Has anyone heard about Artificial Iris Implant? Has any one done the operation to get one? Does it only change the eye colour or does it benefit to the vision too??

Waiting for your answers :)

Seeking advice about Biking at night.

Meghan — Mon, 15 Mar 2010 02:44:41 GMT

So i know in my last post i ranted about not being about to drive and not liking always having to rely on others to get me to places, especially when i don't feel comfortable in the car with them. Well now with leaving my current job for another that will only last the summer, i am coming to another conundrum. Biking at night. I am going to begin freelancing full time as a theater electrician in Boston come August, and many of my jobs end late at night. The Boston public transit stops running at 12:30ish, and most my jobs are done at 2/3 am. I don't like the cabs in Boston, they pretend to not know the area at all and are way expensive. Does anyone have any advice about biking in a city? I feel pretty fine biking on the street. Much more so than on a sidewalk (which i hate when other people do it bc i don't normally see a biker til it's too late, and that's why boston has bike lanes/paths in most places). I am scared about intersections, and most importantly biking at night. One time I was on a bike path and it got really dark. The cars were coming at me with headlights, and i was stuck without my own light on the front of the bike. I couldn't see much in front of me because of the glare of these lights, and it is one of the few times I've just started crying about my vision in public (how embarrassing!) Do you wear sunglasses? or a baseball cap? Any advice about biking in the city, and especially at night would be awesome. Thanks! ~Meghan

Curious...

afrowarrior — Fri, 18 Jun 2010 18:41:56 GMT

Hello, I have some questions for you all. I am African American, and no I don't have albinism. A lot of my friends say that I have the darkest skin of anyone they ever met in life. I really can only somewhat understand what is is like to have albinism. People used to call me names like "Darkness" and "Blackout" and "King Kong" and "Wesley Snipes". Of course, that is not the same thing. but, I know many many people with this condition.

1. Where are you from?

2. How old are you?

3. What was the most negative thing that you have had to deal with because of your condition? How do you deal with it?

4.What is one good thing that you can say about being born with albinism?

5. Does albino offend you? Why?

6. What type of albinism do you have?

7. Are there any people with albinism that inspire you? (Like Victor Varnado or I don't know, Yellowman?)

8. What do you think about the killings in Mwanza, Tanzania? What about the severe discrimination against people with albinism in Ghana and Zimbabwe and South Africa? (please don't say general statements like "in africa they ..." My parents are African, and it is very offensive when people sterotype African People. Try to be as specific as you can....)

9. What was it like growing up?

Thanks so much

My new blog & YouTube channel about beauty(and more)

lil_fairy — Wed, 09 Jun 2010 22:56:38 GMT

Hello guys!!!

I haven't posted on here in quite a while but I have been a bit busy with the move and settling in and everything. Yes, I have AT LAST managed to move to Ireland from my home country Italy!!! Fingers crossed it'll be the dream come true I have dreamed of all my life...

So...I had been toying with this idea for a while in my idea and at last plugged enough courage to do it, so here are the links

http://hazyfairyland.blogspot.com/

http://www.youtube.com/lilfairydoll84

I know there are many people with albinism who are quite against the whole changing hair colour, fake tan, make up etc aspect, but unfortunately we don't all feel as confident in our own skin. After all if a person without albinism colours his/her hair and uses fake tan, why should it be aany different for us?!

Anyway... I hope it might be of interest/help to anyone...

Talk soon

Lil

Research

jillyjill — Tue, 06 Jul 2010 00:14:59 GMT

Please use this link and complete the survey. This is part of my research. I am attempting to promote awareness about albinism as it relates to education. So if you don’t mind I would greatly appreciate it.

http://www.surveymonkey.com/s/KKMWNXH

Silent Auction

MrsChrisK — Fri, 02 Jul 2010 02:03:42 GMT

Hey there .. just a friendly reminder that we are still looking for donations for the silent auction. They don't have to be NOAH or vision related. We will accept gift cards, donated items, hand made items. Please contact me at ckramer@albinism.org if you would like to donate something for information on where to send it. You can also just bring it with you to the conference! See you soon!!

Question from a parent with a child with albinism

Andrew's Mommy — Sun, 23 May 2010 00:20:16 GMT

I know there is a big deal made about Braille in the NOAH community. The founders of NOAH seem to be all dead set against it. I have spoken with some adults who have low vision not albinism. Everyone that I spoke to said they wish they learned Braille at an earlier age or just were taught braille at some point Most complaints were having the big print and not being abled to read as fast as their friends, giving speeches and thought it was embarashing using or wearing the mini microscope lens. Oh, yea being teased awhile the teaches had to go out and make extra large copies during class.

I was wondering, has anyone learned braiile?. Wondering what your vision is, do you drive and what do u do in low lighting settings? For example,is it hard to read menus in a low lighting restaurant? Or Using a Mac machine in any setting. I know I have a hard time seeing it if the sun is directly on the screen. Sorry to ask questions. Just trying to figure out what will be best for my child. All of you have been through the school system. I know around 2nd and 3rd grade is when it gets bad. I do not care what is politically correct. I want real answers. I just do not want my son to get by. Seems like a few people with albinism I have spoken to have said this and it bothers me. Thank you so much for your time..

Single parents with albinism

Michelle — Sat, 20 Jan 2007 03:20:43 GMT

I was curious if anyone out there is a single parent? I am a single parent with albinism. It definately makes life interesting getting on and offf bussesd and walking home with groceries while wheeling around a 1 year old baby.

I'm looking for some advice and support.

Jason H — Sat, 19 Jun 2010 02:15:22 GMT

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Hello, my name is Jason. I'm 25 and have been legally blind since birth. I have ocular albinism x-linked and all the lovely bells and whistles that come with that. I left Arkansas in 2008 because of the pitiful transit system my city had and moved to Saint Louis, but the job crisis means so many months later I'm still unemployed.

I've been accepted into a graduate program at Washington University and as I gear up for school in August I'm starting to realize just how much of a disadvantage I'm at. I've always been a great student and have never had problems with accommodations, but it's hard to imagine after nearly two years of unemployment I'll see any greater job prospects after graduate school. My vision is poor. I rely on mass transportation to get around and my Social Security checks don't provide that much for living expenses.

I volunteer at the Delta Gamma Center for Children with Visual Impairments and I see that these kids with terrible vision support each other in a way I never got support for. I never connected with any of the five or six other visually impaired kids in my little Arkansas town. I've never had anyone in my life to share the frustrations I feel. Saint Louis doesn't have such a support group and I wouldn't know how to go about meeting people with my disability.

I'm also considering vision therapy. I don't know if it would work or really that much about it. I also don't know if I should start it just on the cusp of entering a graduate program I've been trying for a year to get into. What are your thoughts on that? Any help or support you can offer would be great. Thanks. :)

new to noah, looking for friends

kimbolyn — Fri, 14 May 2010 18:54:55 GMT

Hi,

My name is Kim. I just found this website and would like to connect with others out there who have albinism. I am 31 and live in the Northwest Arkansas area. I am married and have two children ages 2 and 4. I actually have two younger sisters who also have albinism, I just would like to connect and chat about some of the issues we face and the concerns I have about being a mom who is visually impaired. Hope to hear from some of you soon.

Kim S.

Pregnancy and Babies! (pictures)

April_Nicole — Tue, 22 Jun 2010 16:52:28 GMT

So I have a 7 month old now but when I was pregnant i NEVER got on here so I thought i would update you guys with some lovely big fat pictures of me during pregnancy and then some of my little Man now!!

16 weeks pregnant

20 weeks

24 weeks

30 weeks

not sure how far along lol but i was huge

last pic taken before i popped, i was 36 weeks here and my water broke at 37 weeks!

He was born december 1st at 11:58 am 5 lbs 7 oz Dylan Michael

this was just the other day

Advice on Sunglasses

Danielle — Wed, 28 Apr 2010 00:13:16 GMT

Hi everyone!

I'm 19 and I love being outside and traveling whenever I can, and recently I've come to realization that my cheap-o plastic-framed sunglasses just aren't cutting it anymore. My older brother (who is no visually impaired) recently purchased some very nice Costa Del Mar sunglasses with very high-end lenses. These sunglasses were close to $250 though, and I'm not sure that I'm ready to pay that much. At least not until I gain the opinion of the masses. (Haha.)

Ok, so, I do have photophobia (as many of you also may have), and I would like some sunglasses that will keep all those UV rays out of my eyes, keep glare down, and be wearable inside under florescents or other bright uncomfortable lighting. A little style wouldn't hurt either!

Any advice would be great! Also, advice on prescription sunglasses will be helpful too. They too seem very expensive.

What sunglasses are you wearing?

Where do you wear them?

Are there any discounts on sunglasses for those who are legally blind?
Will Medicaid help? (This I doubt..)

Thank you so much guys!

Head Shaking

Debra Johnson-Green — Wed, 02 May 2007 23:30:46 GMT

I have been asked many times why my head is shaking while I am writing I have been told it moves from side to side as if to say no I am a Licensed Vocational Nurse. I was in a patient's room one day charting information about that patient. He looked at me and ask what was wrong, and , had his condition changed. I said "no" He said "then why are you shaking your head no?"It is really embarassing to me and I can't even feel when it is happening. Does anyone else have this problem?

For teens with albinism in NYC....

jennalise — Thu, 17 Jun 2010 18:11:35 GMT

Long running cable TV show is doing an episode about Hermansky Pudlak Syndrome, a rare genetic disorder in which albinism is an aspect. We are doing re-enactments and need a caucasian teenage girl (between ages 12 and 16 is fine) with albinism to portray a younger version of the HPS patient we are featuring. The shoot will be June 23 in New York City. Will be lots of fun, great experience for a budding actress who would like to help raise awareness of HPS!

Please email photos to vescovo@trueentertainment.net if you are interested.

might anyone be interested

r@armstrongcasting — Fri, 11 Jun 2010 16:53:59 GMT

I represent a casting agency located in Los Angeles. I was wondering if you may be able to help us.

We are looking to cast someone with albinism in a music video for the John Butler Trio.

Would anyone that would be interested in a project like this?

The song is about the world being all one and that we are different but all the same. They would like to have as many different people as possible represented in the film. Please be assured that every person participating will be portrayed only a positive way.

Please let me know if know of anyone that would be interested. You can email me at rachel@armstrongcasting.com

Our casting website so that you can see the projects we work on:
www.armstrongcasting.com

Are you self-employed

Lee L — Wed, 09 Jun 2010 15:07:50 GMT

Hi All, I'm putting together a conference presentation on being and adult with albinism who is self-employed. If you are self employed (even if only part time) please contact me at lee.laughlin@gmail.com Thanks! Lee

I am conducting research on Albinism

jillyjill — Sun, 16 May 2010 02:39:11 GMT

I am conducting my dissertation on Albinism. My research is relating to Albinism and education specifically academic attainment.

http://www.surveymonkey.com/s/KKMWNXH

Searching for best laptop for visually impaired

little-peanut — Mon, 03 Aug 2009 15:14:55 GMT

I am not sure where the best place is to post this, but I am an adult with albinism and I have just started my own stationery business. I spend a lot of time on my desktop computer designing invitations, announcements, and cards. My husband and I are going to purchase a laptop soon and I really want to try to find something that will be big enough for me to see, but also be portable enough to travel with. I haven't done a ton of research yet, but was curious if anyone had any recommendations for me. Thanks!

Anybody who crossed this kind of stituation

catchdurai — Thu, 17 Dec 2009 11:19:26 GMT

Hi i am duraipandian from India and i am in my late 20s and i was born with albanism. Now i am going to get married and before that i wanted to know that the generation of mine will have this issue or not. If yes what is the probability for this. Any of the friends knows this or you have the experience pl let me know through my id.catchdurai@yahoo.com

Thanks

List of future career for my son / daughter with albinism

Isaac — Fri, 01 Aug 2008 17:38:54 GMT

Hi,

Please kindly let us know the list of future career available for my son, Gabriel and daughter, Grace.

We are planning their future education and allocate fund from our saving.

Become a lawyer or accountant ?

Thank you in advance.

Best Regards,

Isaac

Do LED lights appear to be blinking or moving to you?

Angela — Thu, 21 Jan 2010 22:51:58 GMT

I've noticed for some time that LED lights appear to be vibrating. However, my family and friends don't see it. This past Christmas they kind of drove me crazy! Has anyone else experienced this?

I would like to hang out with and possibly date a woman with albinism.

Latin4White — Tue, 27 Apr 2010 16:13:00 GMT

Hello, i know this is a strange request, but i have albinism and i think it would be cool to date someone that could relate to my story. if you are interested (and don't mind people staring, lol) write me.

frivolous question for the older folks

perennial — Fri, 15 Jan 2010 16:05:08 GMT

So, this really is a frivolous question: For those of you over 40, what happens (if anything) to the color of your hair as you get older? I am still in my 30s, but my significant other is 41. He has normal pigmentation and is starting to get those inevitable streaks of gray. I've never been to a NOAH convention, and the few others I've met with albinism have always been younger. I don't know what type of OCA I have, but my hair is now a lightter shade of gold rather than white. I'm wondering what, if anything, is going to happen to it as I get older. Will it get lighter/whiter? Stay the same?

I know it's a frivolous question, but I'm curious

having to rely on others to drive you around...even when you don't trust their ability...

Meghan — Mon, 15 Mar 2010 00:14:14 GMT

Hello NOAH board, It has been a very long time since I have ventured to the NOAH forums. I have a problem that i don't know how to deal with really. I live in Boston, but my current job is of course outside of the city. This means that I need to carpool to work. For my first year or so with this job I was going with one person that I feel totally comfortable to be in the car with. He braked at a good time, didn't speed too much, good sense of timing... but it was an extra 15 minutes into his commute to pick me up and drop me off each day (thus making it an hour trip one way each day ACK!) So about a year ago someone moved into my apartment building who also works with me. They became part of my carpool, but after a while this hour commute was killing all of us, so they decided to just drive themselves each day...cutting it down to 40 minutes or so. Let me tell you, that extra 15 minutes of sleep counts. I was very excited about this change! So the first day I got into the car with them (since of course i would then carpool with this new person) and I immediately realized that, I am VERY uncomfortable being in the car with them. Bad timing, aggressive and cautious at all the wrong times, and awful in stop and go traffic. I was in a car accident many years ago where the person I was driving with hit the breaks, but we still banged into the person in front of us because we were too close. So i hate, hate, hate when people ride the butt of other people's cars in stop and go traffic. i mean, what are you gaining by doing that???? So each day since September? I have had anxiety going to and from work. it's really awful. I mean you shouldn't be stressing about the drive to and from work when the job itself has enough stress involved. I actually close my eyes a lot, which makes me fall asleep which is really rude, but i can't watch the driving bc i get so scared. Or I look out the window the whole time and get lost in my thoughts. So my question, vent, is: ~How the HECK do you mention to someone about their bad driving techniques when you can't drive yourself. I may not be able to get a license due to my vision, but man i know not to be on the butt of someone's car. i know when is a good time to turn into traffic and not when to. I know to go a little faster on a highway to not cause an accident. Or to simply relax in the car, just to be relaxed. But there is no way i can nicely say to this person "don't slow down then slam on your breaks then lift your foot and slam on them again. It's making me want to scream." ~And my vent part, It just STINKS that we have to always rely on others. I mean i get so frustrated sometimes! I am fine with the white hair and skin. I really don't mind the vision, except for this whole Not Driving part! My vision is 20/200 so no state would ever allow me to drive. Except there are so many old people who are probably more blind than me driving on these roads or just Mass drivers who, well, stink (sorry guys but red lights mean stop not keep going for six cars, and green means go but i understand because you have to wait for the people running the reds). My city has public transportation, but with this job I MUST rely on people that drive. It just frustrates me...a lot. Of course I have only 15 more work days at this job since I'm leaving for another, but I still have 15 more days of anxiety in a car that I have to go through, and idk if i can take it... Ok I'm done. Thanks for listening ~M