Conference moira::parenting

    I have heard of this and I've seen people who have it.  I'm sorry
    your little daughter has to deal with it so young (and you too).
    Although, at such a young age, she may not be as self-conscious as
    say, a teenager who develops it.  
    
    Coincidentally, I happened to catch part of the Montel Williams (sp?)
    show the other day and this is one of the diseases they discussed.
    
    There was a 14 year old girl on Montel's show who had had
    the disease since she was ~11 and she is now totally bald.  She
    seemed very well adjusted...to the point where Montel told her that
    if she felt more comfortable wearing her wig, to put it back on,
    and she declined.  She felt more comfortable without it.
    
    Another woman on the show was about 45 and had the disease since she
    was about 35.  She chose to put her wig on, and she talked about
    worrying how her children would react to her when she was losing
    her hair.
    
    The whole gist of the show was that there were people with disorders
    that caused them to "look" different, and how society reacted to
    that, and how *they* reacted to society.  ie, Should they "cover"
    their difference so as not to make people in general uncomfortable?
    
    Some of the people were black and had the disease that Michael Jackson
    has that causes them to lose their pigment in their skin...although,
    not all at once.  So, the people looked either white, with blotches
    of black skin, or black with blotches of white skin.  There was a lot
    of pressure on them to either wear make-up to be all one color, and
    the woman who was black and turned white, there was a lot of pressure
    on her along the lines of "aren't you proud of your heritage?  Are
    you trying to look white?"
    
    Is your daughter seeing a dermatologist?  I'm sure he/she could
    refer you to a support group and/or suggest ways to cope.
    
    I'll see if I can find any more information on this, but in the
    meantime, I would try to minimize the role your daughter's hair
    plays in her overall value.  Like I would tell her how beautiful/
    smart/loving/kind/friendly/thoughtful etc she is...and keep
    reinforcing it.  
    
    Good luck and keep us posted.
    
    Noranne

    
    Robin,
    
    My heart goes out to you.  I have a 3 year old and despite what reply 
    .2 says, 3 year olds are very self-conscious more so than I expected.  
    I 2nd what .2 said about trying to minimize the role of her hair and
    the whole hair loss episode.  Try not to show her your concern about it
    they learn alot from us and our reactions. 
    
    Perhaps you can help her with pretty hats etc. Provided, of course, you
    find out what causes this and that covering her head won't further her
    condition.  I've gotten lots of catalogues in the mail recently with 
    beautiful spring hats.  These might help her if children start
    teasing.... which they do full force at 3 years old.  
    
    I almost cried when some of my daughter's friends teased her for the
    first time.  All she wanted was me to cuddle her and that made me even
    sadder.  Unfortunately they (children) learn from others, older
    children or siblings even TV.  They don't mean it...but...
    
    I hope summer finds her happier and her hair in full bloom...
    
    Rose Marie

    
    
    Does this condition have something to do with the immune system?
    I have heard of a condition (something to do with the healthy
    cells thinking that the hair folicles (sp) are 'bad' so they
    attack the hair folicles which results in hair loss.
    
    I am not sure if this is the same condition that your daughter
    has but I know that in the above case, most likely, the hair
    does not grow back.  You said in your note that hair should
    grow back so I'm thinking that your daughter may have a different/
    less severe condition.?
    
    The dermatologist is the best place to start.  What an awful thing
    for your daughter and your family to go through.  I do hope that
    her hair loss is just temporary and she gets better (I'm sure i'm
    speaking for everyone in this notesfile) very soon.  Wondering how
    hard she is taking all of this would be a great concern of mine
    also.  I'm sure that by your being there and comforting her, she
    feels more safe and secure.
    
    Please let us know how she is doing.  I will be thinking about her
    and hoping for a speedy recovery.
    
    Hugs,
    Chris

    Well we took her in for another check with our regular Dr.  I am really
    glad that we went -- she put my mind at ease (at list a little bit).
    
    She really feels that this is temporary, it WILL get worse by the end
    of this month and possibly through the beginning of next.  It will then 
    start to grow back - but probably take up to 1 1/2 years.  She also
    mentioned that sometimes they see this after the person has had a very
    high temperature.  I then reminded her that Kati had spiked a temp of
    103.+ off and on for a couple days about 3-4 weeks earlier.  She
    thought maybe (?) this could have been the cause.  I hope so.
    
    The Dr. also talked to Kati a little bit about it, and told her that we
    would need to find her some really NEAT hats to wear this summer.  We
    also went out and bought her a special comb (Miss Piggy).  She had been 
    using my pick for her hair (I didn't want her using a brush), so we though
    we would get her, her own special comb.  The Dr. suggested getting her a
    wide toothed comb - to lessen the amount of hair that would get pulled out.
    
    Thanks for all your replies, I'll let you know how things turn out.  It
    is still really sad to see her this way, but knowing that it isn't
    something she will have the rest of her life helps.
    
    
    	Robin
    
     

    
    Hi,
    
    I just wanted to write and tell you that my husband had this condition
    last year, on the side of his head, in front of his ear.  It was
    diagnosed by the doctor as Alopcea (I may have the spelling wrong).
    Anyway, the bad news is that it did last about six months, but the
    good news is that his hair did grow in completely evenutually.  At
    its worst, it was about 1" x 2".  Also, although my husband is not
    a man who spends much time thinking about his appearance, this REALLY
    bothered him a great deal.  He was extremely sensitive about it, even
    though because he could cover it up, it was barely noticeable.  So
    I second the notion to give your daughter lots of support through
    this.  It could be pretty tough on her...
    
    Best of luck,
    Lynn

    I had a minor version of this, however it attacked my eyelashes.  The
    dermatologist stated as did noter .3 that the immune system thought the
    hair folicles didn't belong there and attacked them.  He injected
    cortezone(sp) with a very fine needle (ouch!) on two different
    occasions and they did grow back probably in about 3-4 months.  He said
    that it's sometimes prompted by stress.
    
    Good luck and I hope the hair grows back soon!
    
    Jean

    I don't have any expierence with Alopecia Areata but found the 
    following in my current Sesame Street Magazine Parent's Guide 
    (May 1993):
    
           National Alopecia Areata Foundation (NAAF)
           710 C Street, #11
           San Rafael, CA 94901
           (415)456-4644
    
    There wasn't an article in this issue just a letter from a reader in
    response to an article in their December 1992 issue.  Evidently the
    foundation provides information and a list of regional support groups.
    
    I have a 3-year-old also and can only imagine what a tough time you 
    must be having.  I hope this information helps.  Take care, keep 
    smiling and give her lots of love.
    
    Good luck,
            Kathy 
    

    
    Robin,
    
    How is your daughter doing?  I've thought of you in the past few months
    and was hopeful that things have changed for the better.
    
    Thinking of you and your little girl,
    
    Rose Marie