Author Message

My friend's son has been diagnosed with alopecia areata and we are tryilng to
find out as much about the disease/syndrome as possible.  Is there anyone out
there who can inform us about the nature of the disease?  Is it progressive or
can it be stopped at any point by medication, change in lifestyle patterns,
etc.?  What are the typical treatments?  prognosis? what does the latest
research say about it?  What is the best method of managing it?  Thanks for
any help.

Uucp: ...{gatech,ames,rutgers}!ncar!asuvax!stjhmc!167!182!Lorna.Roth

Fri, 18 Mar 1994 21:18:32 GMT


>My friend's son has been diagnosed with alopecia areata and we are tryilng to
>find out as much about the disease/syndrome as possible.

This information is from the National Organization for Rare
Diseases's database on Compuserve.  NORD is an organization that
specializes in information on rare diseases and will put you in contact
with other people or parents of children with the same disease or
disorder.  Their address is:

       The National Organization for Rare Disorders (NORD)
       P.O. Box 8923
       New Fairfield, CT 06812 (USA)
       Phone:    (800) 999-NORD
       (In CT):  (203) 746-6518

NORD has information on some 500 rare disorders and also has
information on orphan {*filter*}.

NORD can also be reached on Compuserve.

Alopecia Areata is a progressive condition characterized by loss of
hair.  The cause is unknown and unpredictable hair loss is the only
noticeable symptom.  There are approximately 2 million people affected
in the United States.

Standard treatments are directed at producing regrowth of hair.
Therapies under investigation include a combination of 8-methoxypsoralen
ointment and ultraviolet light exposure and synthetic
immunomodulator {*filter*}.

I am attempting to email you the full set of info from NORD but
mailing to Fidonet is always a bit iffy (I should know, I run a Fidonet
BBS).  Contact NORD themselves to get the info as well.  Also
your friends should contact:

National Alopecia Areata Foundation
714 C Street   Suite 202
San Rafael, CA 94901
(415) 456-4644

Help Alopecia International Research, Inc. (HAIR)
P.O. Box 691487
West Hollywood, CA  90069
(213) 851-5138

The National Arthritis and Musculoskeletal and Skin Diseases Information
Bethesda, MD  20892
(301) 468-3235

                                Bill McGarry
                                (203) 337-1518

UUCP:       {oliveb, philabs, decvax, yale}!bunker!wtm

Fidonet:    The Handicap News BBS (141/420)   1-203-337-1607
            (300/1200/2400 baud, 24 hours)
Compuserve: 73170,1064

Sat, 19 Mar 1994 23:29:55 GMT
A few days ago, I submitted a message about alopecia areata to which no one
responded.  Is there no one out there who knows about the origins, prognosis,
and possible treatments for aa?  If anyone can suggest a particularly good
piece of research, that would be useful, too.  How likely is aa to be related
to stress and if the stress factors are removed from one's lifestyle, can a
recovery take place?  i.e will the hair regrow or will it just stop from
progressing to the next stage.  By the way, did you know that Allan Moyle, the
director/writer of Pump Up the Volume has alopecia areata too?  Hoping to hear
from someone in the near future.
Lorna Roth, Montreal (Concordia University)

Uucp: ...{gatech,ames,rutgers}!ncar!asuvax!stjhmc!167!182!Lorna.Roth

Sun, 20 Mar 1994 21:41:09 GMT

     My friends son and my aunt both have AA.  Could you please send
me your acumulated info also?
                      Thanks in advance!!!

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Wed, 06 Apr 1994 02:01:04 GMT
 [ 4 post ] 

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