From: vmzmeu@halcyon.com (Zmeu Vladimir-Martin)
Subject: Questions about albinism
Summary: question on genetic information on albinism
Keywords: genetic information on Albinism
Organization: Northwest Nexus Inc. (206) 455-3505
Date: Sat, 3 Oct 1992 00:07:47 GMT

I have a woman friend who has albinism and wants the latest information
on the nature of the disorder, the genetics which cause it and how soon 
there might be a cure.  She prefers to stay anonymous., so I will refer to 
her as, "Zoe."  Zoe has ty[spelling?]-positive albinism, we think because  
her hair was as white as fresh snow when she was born, but it's now darker 
blond in some areas of her scalp.  Also she has a few black hairs scattered 
through-out her hair.  

Her parents are both carriers only: the father has black hair, hazel eyes
and Mediterranean, olive-brown skin and tans very dark; the mother has 
light brown hair, pale blue eyes, and average skin tone.  Zoe has a sister,
"Mary," who also has albinism.  Mary has more yellow tones in her skin than 
Zoe, who remains, with the exception of a small amount of freckles on her 
arms and legs, very white, and Mary's hair is very pale strawberry-blond, 
rather than silver-ish as Zoe's hair is.

Zoe and I conjecture that if she and Mary were somehow cured, she would have
black hair and dark skin, like her father, and Mary would be a red-head with 
skin not much darker than it already is.  (Mary already has many freckles all
over her body including on her face, Zoe tells me.)

Mary's eyes are hazel like their father's, but lighter than his.  Zoe
has dark blue eyes -a matter of some surprise as they are even darker than 
her mother's eyes.  They are both legally blind, but Mary has better visual 
acuity than Zoe.  

Zoe has never been able to come to terms with her genetic disorder.  She's
learned to cope emotionally with legal blindness, but not with the effects
of albinism on her physical appearance.  

She dies her hair black, which looks very good on her, by the way, and 
colors her eyebrows and lases black with mascara.  She's skilled enough 
at this that when I first met her, I did not know that the cause of her 
visual impairment was albinism.  She hasn't been able to find anything to 
color her skin, however.  So far, there seem to be two rather unacceptable 
choices in that realm that either of us know about: makeup, but that 
washes off and runs in sweat; or tanning lotion, but that takes hours to 
develop and is impossible to get even and further, it comes out either 
orange or red, which is both unsightly and unnatural.  She wants to look 
like her father, but has found no product which will render her skin a 
permanent, even olive-tan.

Here eyes are constantly crossed and move rapidly from side to side
when she's trying to look intently at something.  She finds it is impossible
to look out of both eyes at once, rendering her with no depth perception.  
The result is that if she is able to look steadily out of one eye, the
other will turn in toward her nose.  This has caused considerable emotional
stress for her as she cannot look anyone straight in the eye.  Because of
this, she often falsely gives the impression that she is dishonest, 
frightened, or frantic.  She says this makes it impossible for her to go 
out at night alone because, while she can see well enough, she cannot 
assume that "look of confidence" women use in such situations to avoid 
getting sexually assaulted or mugged.

"Zoe" does have an e-mail address, but asked me to post for her because the
realm of e-mail and the nets is the only placewhere she is taken for normal,
and she wants to keep that image.  She will, however, correspond with anyone
who has truly helpful information about safe skin coloring pills, ways to 
make her gaze steady as well as having both eyes point the same way, and 
especially, about any genetic engineering advance which could lead to a
cure for albinism.

I thank you very much.

Servus,

Vladimir-Martin Zmeu
vmzmeu@halcyon.com
























Xref: sparky sci.med:18057 talk.politics.misc:48204 alt.activism:16838