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albinoisim - 4/17/2006 3:30:57 PM   
MLskajira


Posts: 275
Joined: 2/17/2006
Status: offline 		 this girl is posting this to inform those who would like to learn, what albinoisim is, as it was described to her.
 most people who have albinoisim are born with some pigment and are either blonds or redheads, they have pale to translucient skin and blue or green eyes. over time, the pigment in the skin, hair and eyes die off, leaving microscopic scars. the hair turns platinum or strawberry, depending on the origanal color, the eyes get an "icy" color and the skin begins to look like thin paper, almost see-through.
 there are a few who are born with no pigment at all, and they are the ones that are remembered. they are the ones with white hair, pink eyes and see- through skin. these people have no indication of pigment haveing ever been a part of their genetic make up.
 when this girl was being seen by her eye doctor, he mentioned that she had NO pigment in her eyes. this girl said,"i have to have pigment, i have hazel eyes, not only do they have color, but the color changes. the dr. said, "you'd think wouldnt you?"
 he brought in  a dermatologist and for the next year or so this girl under went a series of tests where they told her that she had NO pigment anywhere in her body, there were no microscopic scars. for all intents and purposes, this girl should have white hair and pink eyes. she was told that, at that time, she was the only human in medical history that was a "true" albino, with hazel eyes, red hair and freckles.
 this girl doesnt understand it.
 the dr.'s dont understand it.
 she signed papers so her likeness could be used in some medical book, so, to the best of her knowlege, her likeness is in some medical book somewhere.
 that is the truth about albinoisim as this girl knows it.


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RE: albinoisim - 4/17/2006 3:59:52 PM   
Frankd


Posts: 2
Joined: 3/26/2006
Status: offline 		MLskajira,  that's quite an intriguing and informative phenomenon you have outlined there. Thank you so much for that fascinating information.
I have a question for you....
I hear that albinos are more negatively affected by the sun than the rest of us. Does your personal experience confirm this?

On another note, I have seen albinos in other parts of the world. I can confirm that North America and Europe are the best places in the world to be an albino, because albinos can blend in easily with the rest of the population.
In many parts of the world, albinos face discrimination and prejudice that we in this part of the world have got no clue about.
I'm talking about something I saw with my own eyes, not something I saw on TV or read about on the Internet.




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RE: albinoisim - 4/17/2006 5:16:08 PM   
MLskajira


Posts: 275
Joined: 2/17/2006
Status: offline 		this girl posted this because KnightofMists and Vancover_cinful, think this girl is lying about her condition, just because they have never heard of a red-headed albino.
 to answer your question "I hear that albinos are more negatively affected by the sun than the rest of us. Does your personal experience confirm this?"
 this girl cannot go into the sun uncovered, she never swims in the dayllight, only at night. shade doesnt even help. this girl will burn in 5 minutes or less. she feels a little like a vampire.


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RE: albinoisim - 4/17/2006 5:48:55 PM   
proudsub


Posts: 6142
Joined: 1/31/2004
From: Washington
Status: offline 		Thank you for the information. I had an albino in a class with me in college and remember he had a lot of trouble with his eyes. He had to use a magnifying glass to read.

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RE: albinoisim - 4/17/2006 6:05:41 PM   
MLskajira


Posts: 275
Joined: 2/17/2006
Status: offline 		this girl is legally blind and has to use magnifiers and a white cane when she goes to places she hasnt been before.

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RE: albinoisim - 4/17/2006 8:41:21 PM   
Alumbrado


Posts: 5560
Status: offline 		Albinism shouldn't be a surprise or a mystery in this day and age.

quote:

One person in 17,000 in the U.S.A. has some type of albinism. Albinism affects people from all races. Most children with albinism are born to parents who have normal hair and eye color for their ethnic backgrounds. Often people do not recognize that they have albinism....
 
While most people with albinism have very light skin and hair, not all do. Oculocutaneous (pronounced Ock-you-low-kew-Tain-ee-us) albinism involves the eyes, hair, and skin. Ocular albinism involves primarily the eyes, while skin and hair may appear similar or slightly lighter than that of other family members.

 
http://www.albinism.org/publications/what_is_albinism.html


 
 

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RE: albinoisim - 4/17/2006 8:46:21 PM   
LadySeraphina


Posts: 931
Joined: 3/28/2006
From: Calgary, Canada
Status: offline 		Thank you for sharing, young one. It is most interesting to learn about your condition.

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RE: albinoisim - 4/17/2006 8:57:40 PM   
MLskajira


Posts: 275
Joined: 2/17/2006
Status: offline 		You are very welcomed LadySeraphina.

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RE: albinoisim - 4/18/2006 1:02:32 PM   
Lashra


Posts: 4900
Joined: 2/9/2006
Status: offline 		I've seen an albino and it is something to see. I see by your profile that your Native American. I myself am part native american and I have red hair, but my eyes are very dark brown almost black and my skin is very very pale with quite a few freckles because my skin burns so easily in the sun. Interesting..

~Lashra

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RE: albinoisim - 4/18/2006 3:13:51 PM   
MLskajira


Posts: 275
Joined: 2/17/2006
Status: offline 		this girl would like to thank E/everyone who has commented.
Lashra, You might want to consider haveing a dr. look at You. this girl found out she was albino while haveing her eyes checked.
this girl had always been told that there was something different about her.
 when she was given her tribal name, it was TuDi Snowowl, go figure.(hehehe)


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RE: albinoisim - 4/18/2006 10:06:38 PM   
maybemaybenot


Posts: 2817
Joined: 9/22/2005
Status: offline 		MLsKajira:

I am posting this because I have problems when people post inaccurate info in Health and Safety.

If your MDs are baffled by your condition, I suggest you seek a second opinion.

http://www.nyee.edu/faqlist.html?tablename=faq&key=5

http://findarticles.com/p/articles/mi_adm4445/is_2/ai_n16081425

from the second link:
Albinism of just the eyes also occurs. This is called ocular albinism and can be inherited via either an X-linked or an autosomal recessive process. In this form of albinism, skin color is usually normal and eye color may be in the normal range. However, examination of the eye will show that there is no pigment in the retina.


              mbmbn

< Message edited by maybemaybenot -- 4/18/2006 10:25:18 PM >

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RE: albinoisim - 4/19/2006 7:59:53 PM   
MLskajira


Posts: 275
Joined: 2/17/2006
Status: offline 		maybemaybenot, this girl believes you know something about this subject, but not everything.
 this girl did not misunderstand the dr.'s, she was under their care for over a year.
 she knows it is odd for someone to be albino and have red hair, hazel eyes and freckles. she asked the dr.'s "i cant have red hair, hazel eyes and freckles if i have NO pigment." to which the dr.'s would respond "you'd think so, wouldnt you?"
 they dont understand it, so how can this girl?
 all she knows is that she had about 10 dr.'s over a year tell her the same thing, then she signed some papers for her likeness to be published and that was that.
 it is not a condition that requires constant medical attention, at least it isnt for her.
 also, just out of curiousity, why do you always quote that passage about the eyes? if it is pointed at her, this girl doesnt get it. her condition is all over, not just her eyes.


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RE: albinoisim - 4/19/2006 9:08:44 PM   
maybemaybenot


Posts: 2817
Joined: 9/22/2005
Status: offline 		MLsKajira:

Let me answer why I quoted the eye passage. Because it states there is NO pigment in the RETINA, not the iris. You have said you have no pigment in your iris, as I said in the other thread, perhaps you misunderstood or when the MD said eye, he meant retina.

You are quite right, I do not know everything, what I do know is actually minimal. I am not disputing that you are an albino, if I can be clear on that. What I am saying is, basically it is impossible to have zero pigment anywhere and have coloration.

Now, I am not taking a hard stand on that. If I can be shown where what I have read and what I know is wrong, which is possible, I would be glad to re consider my stand.

                               mbmbn

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RE: albinoisim - 4/19/2006 9:20:51 PM   
KnightofMists


Posts: 7149
Joined: 7/29/2005
Status: offline
quote:

ORIGINAL: MLskajira

this girl posted this because KnightofMists and Vancover_cinful, think this girl is lying about her condition, just because they have never heard of a red-headed albino.


*chuckles*  This is rather amusing  as well as being misleading to the truth.  But, I am not surprized by her statements.. sad when a person needs to twist words to gain attention

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RE: albinoisim - 4/20/2006 9:08:36 AM   
MLskajira


Posts: 275
Joined: 2/17/2006
Status: offline
quote:

ORIGINAL: maybemaybenot

. You have said you have no pigment in your iris, as I said in the other thread, perhaps you misunderstood or when the MD said eye, he meant retina.



maybemaybenot, you should go back and re-read what this girl DID say.
 what she said is that the dr.'s told her she had no pigment in her eyes, she didnt say she had no pigment in her iris, or her retina.

 and this girl agrees, it makes no sense to have no pigment anywhere in the body, but have coloring. she stated as much to the dr.'s. as she has stated over and over, they dont understand it and this girl doesnt understand it. it is unusual, to say the least.
 this girl is on the search to find the books that have her likeness, and as soon as she does, she will post it.


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RE: albinoisim - 4/20/2006 9:19:45 AM   
MissyRane


Posts: 1032
Joined: 5/11/2005
Status: offline 		I know this albino, white hair white skin red/pink eyes..the whole standardized package..I haven't noticed it affecting him in any way..it's only the way he looks

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RE: albinoisim - 4/20/2006 12:15:29 PM   
maybemaybenot


Posts: 2817
Joined: 9/22/2005
Status: offline 		No to need  to find the books. I beleive this topic has run it's course on my end of it. My participation in the discussion of albinoism has caused you great stress, so I will leave it alone.

                        mbmbn

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