NOAH AOC

South Carolina

nickell_1 — Thu, 29 Jul 2010 20:53:47 GMT

Laser eye surgery

Ciji — Wed, 28 Jul 2010 19:08:26 GMT

I've been looking into Laser eye surgery for my son who is 5 a vision of 20/400 and with glasses 20/200. He also has nystagmus and he is legally blind. Is laser eye surgery even something I should consider? and what are the chances of him going totally blind?

Sensitivity to (sun)light

MonaP — Thu, 29 Jul 2010 17:22:09 GMT

Hi. I'm a new member of the site. My daughter has been in the care of a Pediatric Opthamologist since she was about 3 months old. On our last visit, my now 3 1/3 year old was diagnosed with Albinism. She has Congenital Nystagmus and Albinism was always talked about but now I guess its official.

My Dr stresses the need for a wide brimmed hat and/or sunglasses due to light sensitivity. A hat and sunglasses makes perfect sense for any child so I take the advice to heart but.....I have never noticed my child being sensitive to light. Nor is her skin any more sensitive to the sun than her older sister's.

Is it common for her not to be light sensitive? Should I expect her to become more light sensitive over time? I don't think I'm missing any cues from her.

I'm curious if others are in a similar situation and/or what others have experienced.

Thank you for your time.

Mona

Starting school

Ciji — Wed, 28 Jul 2010 08:15:45 GMT

Hi every one, My name is Ciji. My son Elijah is 5 years old and is starting k-grade in Sept. He has albinism,nystagmus, and also is legally blind. Is he going to be able to go to a public school? And did any one or your childern get picked on in school? Also what are some steps I can take to help him in school? He is getting glasses but with them Doc says he'll see 20/200 is that really bad vision?

Counseling for families

Ciji — Thu, 29 Jul 2010 08:14:33 GMT

Is there any counseling for families for families that are dealing with legally blind. My so has albinism, nystagmus and legally blind a vision of 20/400. And it's really taking a pull on me as a mother. my hubby I don't know what he thinks of every thing. He don't say much about it. and I was just wondering if there were counseling that would help us as a family.

about our hair

Typozfem — Mon, 24 Jan 2005 05:00:00 GMT

For the last few years I have refused to fry my hair and have been going napprural. BTW did you know that the main ingredient in perms was Drano?

Anyway, I have been wearing afros, braids and now am growing beautiful Sisterlocks. Have any of you had the following experiences?

Have people, White and Back asked you if that was the real color of your hair? The last time a roomful of women asked me that I offered to drop my pants for them.

Do White people ask you how you got that texture? How do you get it that "curly"? That truly ticks me off. They never ask pigmented women that, How come they ask us?

Do they ask you how long it will stay that way? Do they ask you where they can have theirs done?

This is why I get angry. They (White folks) assume that my hair is the same as theirs. They assume that it is straight like theirs because it is blond. They assume that the natural nappyness was artificially put there. They assume that the dreads and locks we wear is an interesting fad that they would like to try. They assume that the dreads and locks can just be taken out on a whim. They even wonder why I got them. Do they ask pigmented people these questions? No.

Don't get me started. I can feel myself going off on a tangent.

Typozfem

Read my article about growing up black and white.

Mo — Thu, 20 Nov 2008 16:49:49 GMT

Check out my recently published content on AC:
<br> <a href="http://www.associatedcontent.com/article/1210049/why_isnt_my_skin_brown_growing_up_as.html">Why Isn't My Skin Brown? Growing Up as a Black Girl with White Skin</a>

Please give me some feedback, I am starting to regret putting myself out here like this. But I have always wanted to write a book or something about the things I've experienced growing up.

Meetin Great people on Facebook

Sherelle — Thu, 29 Jul 2010 02:52:58 GMT

I"m 22 white chocolate i kno someone can relate to me

Where my sista's and bratha's @ come on...ppl

Queensherelle@yahoo.com

that's how you can find me Please send me an Add ......

Tanzania to hang blood-drinking killer of albino girl

msruby45 — Wed, 28 Jul 2010 22:48:21 GMT

AT LAST THEY ARE FINALLY ACTING AND TAKING THESE HORRIBLE CRIMES SERIOUSLY!! AMEN!!

http://www.msnbc.msn.com/id/38449490/ns/world_news-africa/

DAR ES SALAAM - A man has been sentenced death by hanging for killing a five-year-old albino girl in Tanzania by hacking off her legs with a machete and then drinking her blood, media reported on Wednesday.

The High Court in the northern town of Mwanza on Tuesday convicted 50-year-old Kazimiri Mashauri after hearing he disappeared with the severed limbs and left her to die.

The girl's killing was one of a spate of attacks on the country's estimated 200,000 albinos in the past years, mostly in the remote northwest of the country near Lake Victoria, where superstition runs deep.

Albino hunters kill their victims and harvest their blood and body parts such as hair, genitals and limbs for potions.

Their body parts are prized in some regions of Tanzania, where witchdoctors say albinos -- who lack pigment in their skin, eyes and hair -- bring luck in love, life and business.

Al Shaymaa Kwegyir, Tanzania's first albino member of parliament, welcomed the conviction and praised the government's crackdown on the inhumane killings.

"The court ruling should serve as a lesson for others," Kwegyir told Reuters by phone from Tanga region where she is campaigning for a parliamentary seat.

Conference opening and closing videos

mktighe — Mon, 19 Jul 2010 16:03:07 GMT

The videos at the opening and closing sessions and slideshow from the conference were so entertaining and well done. Any chance they can be posted to the NOAH website or to Youtube? I'd love to share them with our family who wasn't there.

How to do your makeup....

April_Nicole — Wed, 16 Jun 2010 15:58:18 GMT

ok guys so i made a youtube channel for makeup tutorials and hair stuff and beauty stuff just cuz i really like all that stuff, it is not specifically for people with albinism but just to show different way i do my makeup, and if you guys anna check it out the link is www.youtube.com/user/simplysweet0604 check it out and please no rude comments, cuz i know some people dont do their makeup and dont want to, but if you do and you wanna see how i do it then check it out!!

Disability

angelbaby — Mon, 26 Jul 2010 23:07:24 GMT

My daughter was recently diagnosed with Albinism and is legally blind. Does anyone know if albinism is considered a disibility and if there is any kind of financial assistance available?

Do people with albinism always have nystagmus?

AdelineEzraBaby — Fri, 14 May 2010 19:51:57 GMT

Just a question-I am going to start the process with doctors to try to figure this out. My daughter has strabismus, I don't think she has nystagmus though. I have not noticed either of these problems with my son. Thanks.

Explaining My Cane

DecolorCervus — Thu, 23 Jul 2009 04:21:20 GMT

Hi!

My name is L, and I'm an OCA2 albino. I should probably be in the adult forum, but I feel I "mesh" more mentally with the teens here at age 20. To the point, my hardest visual problem to cope with has been severe photophobia, and at the advice of a blind friend, I've started learning cane travel to lessen the strain on my eyes in high-light situations. This improved my ability to navigate duiring the day dramatically, but I've run across a new problem, other people!

People have accused me of faking being blind, of being an attention seeker and of even making fun of the blind, even my life-mate's family thought it was an attention scheme when This actually almost made me stop in my tracks and go back to a life of pain and disorientation. Does anyone have any tips for explaining this to nosey people? Should I just ignore them? One of the bigger issues is my ability to drive (under special conditions) has caused me some trouble, as I folded my cane up from being in a painfull bright store and went to my vehicle. Another issue is explaining to business accquiantances that I'm an artist and illustrator (granted, so is my blind friend who encouraged my pursuit of cane travel)

I don't even really try explaining my albinism any more, as because I do not have pink eyes or white hair, I "Must not be albino" in the eyes of the general public. I wish I didn't have to ask about this at all, but people seem to want to make it their business. Is the best thing to just walk away? Mostly, I just wish for some input on how to explain this, and deal with the overly curious, and have the thin veil of hope someone else has this same problem as well.

Thanks and take care.

Does\can anyone drive at night?

laelmore924 — Thu, 20 Aug 2009 16:45:49 GMT

My name is Lindsay, I am 26 from Michigan. I am looking to see how many people with albinism drive at night. I have been driving for 7 years now and all of a sudden the state of Michigan decided that they were going to restrict me from night driving (with bioptics) even though my driving record was\is imaculate. I fought the situation, appealed, went to a hearing and won my nightime driving privilages back. My concern and interest in knowing how many of you drive at night is for my sister. She (wwhom also has albinism) is almost 21. Mallory recieved her license almost a year ago and they have restricted her from night tiume driving even though her and I have the same condition. Our eye doctor stands behind our abilities and has written that in some cases driving at night is easier, so on and so fourth. However, my sister went to appeal and lost her case when it went to a hearing. The next step is to go to circut court and hire a lawyer. Mallory and I went to speak with a lawyer a few days ago and it is obviously going to cost quite a bit and she isn't guarenteed anything, obviously. SO this is where you come in. The lawyer mentioned getting testimonials from individuals who drive at night (whom have been granted the privilage like myself.) Through research, my sister has found that many states have excluded teh night time restriction for cases such as albinism that are'nt affected by the lack of light at night.

Forgive my misspellings... it won't let me spell check?

Thanks so much for your help (in advance)!!

Lindsay

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.

NOAH Chapter in Saint Louis and surrounding area

JessicaTraskReagan — Tue, 27 Jul 2010 18:29:03 GMT

Hi Everyone,

I'm looking for a NOAH Chapter in the Saint Louis Area or just to network with other families that have children with Albinism.

NOAH Chhapter in Saint Louis

JessicaTraskReagan — Tue, 27 Jul 2010 18:19:23 GMT

Hi Everyone,

I just recently moved to the Saint Louis area. I live in Wentzville, Missouri. I'm looking to get involved with the Albinism Community in the area.

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 :)

Help with a writing contest

Angela — Tue, 27 Jul 2010 03:33:42 GMT

Hi Everyone,

I entered a writing contest and I could possibly win an IPad!!! But, I need your help, please click on this link and vote for me. You don't have to sign up for anything, just click to vote. You can vote once every day and at the end of the week, the person with the most votes wins. So, please!!!!!!!!! :) Also, will you pass the word along for me? Thanks, I really appreciate your help!

http://howdoyou.com/pages/ViewEntry.aspx?entry=865

Angela

What's your Facebook!

Sherelle — Tue, 22 Jun 2010 19:19:10 GMT

I'm always on Facebook I would love to make some friends i could talk to get to know and we can encourage each other to reach are dreams

Mine find me by email Queensherelle@yahoo.com or typing my name Sherelle Fields

I can't wait to meet everyone

11 Month old Concerned about Daycare ??? need advice quick !!

AEH2009 — Fri, 23 Jul 2010 00:54:13 GMT

Hey there,

I am having a very hard time desiding if i should continue with my school as a medical assistant and then try for nursing or to give up my dream and work for a while and stay home with Hannah .... i want to provide a good career for my family and help out. Today i visited a local daycare center. it was nice. but my mother side is just telling me to stay home with her.... maybe im nervous and scared. i really could use some personal advice from anyone !

She is a great baby and i think that she would be fine with other kids. But for her vision and sun exposure..... i dont know if i trust people enough i guess.... ADVICE !!!!! thank you :)

Wraparound prescription sunglasses for kids?

provenance — Thu, 22 Jul 2010 18:59:41 GMT

Our daughter is almost 3, and we are trying to find wraparound sunglasses that will accept a prescription lense. She is very photophobic, and the wraparound will help with the glare. Has anyone found anything like this?

Our low vision doc did find a goggle like frame but it has a velcro band. We would like ear pieces. Because of our daughter's head shape, the elastic band glasses we've had in the past just haven't worked. I just thought I'd post here just in case someone had found something like this.

Any comments/suggestions would be much appreciated!

Amy

Hair treatments or shampoos for white hair turning yellow?

AlaraJRogers — Sun, 18 Jul 2010 17:22:17 GMT

My husband and son both are albinos, and I consider their natural white hair color beautiful. But both of them have developed yellowing on the exposed or older parts of their hair. My husband keeps his hair long, and it ranges from white hair at the top near the roots down to a deep yellow color at the ends. My son's hair is shorter, and yellows all over.

When my husband lived in a rural area, he says his hair remained white, but we live in a big city, so we think it's the air pollutants that are doing it, or possibly the water. Does anyone else have this problem, and if so, has anyone found a hair treatment or shampoo that can reverse the effects of environmental pollutants or strip them off and restore the hair to its natural white?

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