Re: [Alopecia Areata Support Group] Hi there...
Hi, T...Sorry my response is a few days late...I absolutely know what you mean about the "shiny" spots. I don't have alopecia, but my 7 1/2 yr old daughter does and that is how it started when she was 6. One shiny spot at her crown. Unfortunately for her, it just didn't stop and within 3 short months, she was AT. We saw multiple Dr's, and her endocrinologist said it was classic alopecia and would never grow back! As her mom, I freaked, of course! He called the scalp "waxy"...Anyway, my husband and I (not to mention my oldest daughter) got so sick of the Dr's and the negativity that we just stopped going and stopped any/all treatments. Well, almost a year to the day she lost her hair, it had all grown back...very healthy, shiny, even a wave to it! We thought it was TE as prior to the loss, she had many unexplained high fevers, yet all of her blood work was always normal. A week ago, she had a high fever and the very next day, a shiny/waxy bald spot above her left ear/temple area. Now, just in the past week, she has all over thinning???? She and we, are devastated! Is it happening again? What the heck? It is just not fair to a little child! Here she got her confidence back, signed up for sports again, and is soooo excited to start 2nd grade without hats or wigs! This disease sucks! Our hope/prayer for her is that it will just be the one area we can cover, but with the all over thinning, I'm worried she'll lose it all again and I don't get it! From what I've researched, when hair completely grows back, it usually stays awhile???? Sorry to ramble, but know you're not alone in this crazy thing! So unpredictable!
~Char
----- Original Message -----
Sent: Sunday, June 28, 2009 9:06 PM
Subject: [Alopecia Areata Support Group] Hi there...
I'm new to the group and am excited to learn any information regarding this crazy disease which seems to have no rhyme or reason. I've had alopecia on and off now for about 13 yrs; since I was 24 yrs old. It's never really progressed passed a few really bad patches or "spots" I like to call them until recently when my spots increased in number, and I am now experiencing a different sort of phenomena in/on my scalp. I'm noticing that the spots which look like scar tissue....does everyone know what I'm talking about? The skin looks shiny "keloid-like" (sp?) ... anyway... I'm getting the super shiny, albeit small at the moment, spots/specs everywhere....I don't know if I'm just being paranoid or if this is the beginning of what it looks like when the disease starts to spread out and become more aggressive? If anyone could help me with this riddle that would be great. If it is, then I can start to be more proactive about it; and if it's not, I can start to concentrate on more important things -- like being happy!
Sincerely T
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