Conference moira::parenting

    Gail,
    
    One makeup that can be used is Covermark.  I believe it was designed
    for this sort of problem.  
    
    Some of the new bronzers look pretty good and the goal is to even out
    the "tan" rather than completely hide the spots, that isn't going to
    happen, at least it never did on my patches of vilitigo.  I don't mess
    with evening it out now, but I am old enough that I don't mind ansering
    questions about it and it is only on one leg and just below the knee.  
    I just use a block with spf 50 or up on my legs anyway at out altitude
    you still tan and will burn with anything less than zinc oxcide and I
    am not going to live in that for the summer.  
    
    meg
    I 

    Meg,
    
    Thanks for the reply.  Krystin hasn't learned yet how to react to
    people who continuously stare at her.  She also thinks that people
    don't like her because they're staring.  She even said that she will
    never get married because the boys all think she's ugly.  (My poor
    baby!)  I keep telling her she's is so beautiful, but I think because
    she doesn't know anyone else with this disease, she feels she's all
    alone.  I've called some places in the NH area and there are no support
    groups for this.  Don't you think there should be?
    
    As far as the tanning stuff, I thought, "Wouldn't it be nice to put this 
    lotion on you and have it look like your not spotted?"  And that's 
    exactly what Krystin looks like and she has it all over her body.  
    (I even heard one mother tell her child not to play with Krystin at the
    beach because Krystin had "crud" on her!)
    
    Where do you get this "covermark" stuff?  Is it a foundation type of
    makeup?  I can just imagine how much this costs...but I suppose any
    price is worth it if it brings a smile to Krystin's face.
    
    Thanks again!
    Gail
    

    Gail,
    
    having "white freckles (or angel kisses) is special IMHO.  some people
    say they have had some luck with b vitamin supplements, but I haven't
    noticed that it makes any difference to my spots.  I also call my
    freckles of normal pigment angel kisses, we are a pretty spotty family. 
    
    Covermark is a foundation cream developed to hide pigment differences. 
    I don't know the price, as I have never been particularly bothered by
    mine.  My dad also had some vilitigo patches on his leg and back so I
    thought it was a redhead thing until I was in my late teens and found
    out it had  name.  Actually if she has that much vilitigo, I would look
    at the bronzing/sunless tanning creams.  Be Forwarned though.  This
    stuff will not give the protection from the sun a normal tan will.  She
    will need to continue to use a good sunblock.  I learned this the hard
    way, and got to try to replace the tan after a week of peeling and
    pain.
    
    meg

    Meg,
    
    My daughter Alison was born with some large cafe au lait spots on
    different parts of her body, with one on her face that covers almost
    one side of her face.  I took her to see a specialist at Darmouth
    Medical Center about ten years ago (she is now 20) because they were
    concerned that she might have Neurofibromatosis (elephant man disease)
    which she did not (thank heavens).  While we were there though we were
    seen by a dermatologist who said that there was makeup used by burn
    victims to cover scars and that if Alison became very self conscious
    about her birthmarks she might want to use it.  She never really asked
    for anything to cover them (just always wore bangs) so I never looked
    into it.  You might want to call a dermatologist in your area and asked
    about this makeup.  I also have a friend who ordered some makeup from one
    of the infomercials for people with severe acne scarring and swears by
    it.
    
    Vickie

    Meg,
    
    Angel kisses?  What a wonderful thing to say to a child!  I'll have to
    use that.
    
    Krystin does have it bad and we ALWAYS use a special sunblock that
    works really well on her. (Can't remember the name of it for the life
    of me...guess it just goes to show that I need summer weather real
    soon!)
    
    I was just trying to figure out if the tanning stuff would work on her
    since she actually has two different colored skin.  Plus, I don't know
    how safe this stuff is to put on a child.  
    
    I suppose I could just buy some and try it on a small patch on her
    tummy or something.
    
    Thanks again for the kisses idea....
    

    The tanning stuff is essentially semi permanent dye.  It wouldn't hurt
    to try.
    
    There used to be a book for us freckled kids when I was small.  Pointed
    out how boring life would be without freckles.
    
    meg

    The sunless tanning creams work pretty well.  I use them all the time!
    I use Clinique cream. They also have a spray.  I would suggest applying
    it to her unpigmented areas to see how dark it gets, then reapply or
    use less, depending on the degree of color you want. It is also
    important to note that it does not provide any sun protection. You 
    would still need to use sunscreen on all parts.  The one I use lasts
    about 4 days. Clinique is a cosmetic counter in most larger fine
    department stores (Filenes, etc.). You are supposed to exfoliate first,
    then apply the cream and wait about 30 minutes before getting dressed,
    otherwise it will rub off and stain your clothing. I have never had my
    clothes stained, but it's a precaution you should take if she is
    wearing light or white.
    There are other kinds you can get in CVS and places like that which
    offer degrees of 'color', light, medium, dark.  I prefer Clinique
    because my skin is very sensitive. It feels like moisturizer, not heavy
    or greasy. It's also more expensive, naturally, but I'm worth it ; )
    Sarah 
      

    
    
    I'm curious what a psychologist (or other professional) might
    recommend for handling other people's reactions when a child has
    a condition such as this.   Does anyone know?   Is it generally
    understood to be better for the child to cover the condition up
    as much as is possible?  If so, are there medical options in 
    addition to the cosmetics?   What do readers who have children 
    with other visible conditions do to educate the public - i.e.
    to avoid a situation like the one Gail described at the beach?
    
    Just curious - 
    
    Carol  
    
          

    Carol,
    
    I looked briefly into tatooing the area I have which is only about
    10-12 sqare inches to a flesh tone.  However the location for that
    would be extremely painful as it is on the shin bone and doesn't have a
    lot of padding.  
    
    I people ask me what that thing on my leg is I do explain it.  I don't
    think it is fair for a child to have to continue educating adults who
    don't have the good manners to ignore or ask nicely.  Besides if enough
    people are curious, you would never get in any play/garden/swimming
    time.  
    
    meg

    Here's what happened during Krystin's first week of school:
    
    K:  Mommy the kids didn't want to play with me on the playground.
    M:  How come?
    K:  I don't know. They just stood there and looked at me and then were
        telling secrets to all the other kids.
    M:  How do you know they were saying something bad?  Maybe they thought
        you had really beautiful hair or you were really cute.
    K:  If they were I think they would have wanted to talk to me and play
        with me. (Kid's too smart for her own good.)
    M:  Well, did you go up to anyone and introduce yourself?
    K:  Yeah, I said hi to a girl named Sue (Can't really remember the kids
        name right now.) 
    M:  So you said hi.  Was she nice?  What did you guys talk about?
    K:  Yeah, she's okay.  She asked me what this stuff is on my arms.
    M:  What did you tell her it was?
    K:  Vitiligo.
    M:  Honey, kids and alot of adults don't know what vitiligo is.  Let's
        try to think of something to tell them where they'll understand 
        better.
    
    Sure enough we thought of something and the next day she came home and
    said she played with 2 boys and 3 girls at recess.  She ended up saying
    the following when asked what it is:
    
    	Oh, that's just where I don't get a suntan.
    
    It worked!

    As far as people's reactions...I don't know.  I'd like to punch the
    living crap out of every single rude adult who says something to my
    kid, but obviously I can't.  (Of course I did to that lady at the beach
    while the kids were at the snack counter!)
    
    The problem is is that it's a disease people are unaware of.  What
    would happen if Oprah did a program on this and other diseases like it
    so that more people would be aware?  Would it work?  I don't know, but
    at least it would educate one more person and we would have to deal
    with one less insult.
    
    Treatment?  Maybe someday.  There are some treatments, but nothing is
    written in stone, nothing is proven, tons of side effects, age, etc.
    
    I would look into treatment for Krystin, but I would want to wait as
    long as I can, I don't want to do something that would give her some
    other horrible disease and I don't want to do something for her if she
    doesn't want it.
    
    The other side of this treatment coin is this:  If your child honestly
    had a real hard time dealing with this disease and was really unhappy
    and depressed would you provide treatment?  Isn't that telling your
    child that BEAUTY DOES MATTER.  Or would it be "okay" just this once 
    because you were trying to make your child happy?
    
    I don't want Krystin to grow up thinking that she has to look "normal"
    to be beautiful, but yet on the other hand, I wouldn't want her to be
    so depressed that she would hold it against me for the rest of her life
    because I didn't provide this treatment for her.  What would you do?
    
    Gail

    Gail,
    
    Let your daughter lead the way.  She is the one living with her angel
    kisses, not you.  Actually vilitigo has been made public, but I can't
    say it was necessarily the best publicity either.  Michael Jackson has
    Vilitigo and opted to bleach his skin to mask the spots, rather than
    darken the spotty areas.  He talked about this about 4 years ago on
    20-20 or whatever Barbara Walters interviews people on.  
    
    meg

    Gail,

    I would not have treatment witheld in order to teach your daughter
    that appearance doesn't matter that much. Sadly enough, it does
    matter even though it shouldn't, and she will find it out from people's 
    reaction to her -- in fact she is already finding it out. I think a
    person's self image might be more badly affected by feeling alone or
    outcast as a youth than it would by having treatment for something 
    that affects their appearance. Of course, if there is a risk of adverse 
    reaction to the treatment, that would definately factor into your 
    decision on whether or not to pursue it.
    
    I'd almost guess that if you sent mail to Oprah, she might actually
    do a show on this - you might even become guests on the show. 

    We have a neighbor who has this on his hands. He wears gloves most of
    the time. I think its mainly because he is protecting his hands from
    ultra-violet rays though, and not to hide the vilitigo.

    I think the easy answer about not tanning in those places is a good one!

    Leslie

Just to clear up a little confusion: the spelling is "vitiligo", "T" before
"L".  An Altavista search shows up a large number of pages, including

	http://pegasus.uthct.edu/Vitiligo/archive.html

the "Vitiligo Archive Page", which looks like a good starting point for
information.

Altavista shows up nothing for "vilitigo", so I gather this isn't a common
misnomer for the condition, even though I recall hearing it pronounced that way
some time back.

						Brian

    Dislexics of the world untie
    
    ;-)

    soop, er, I mean oops ;-}