I'm sorry--that last message (2 of 'em) from me was to be private. It woudn't go through that way (maybe cuz it was so long?) so I sent it on your site. I hope you can delete it if you want.

(Second part of e-mail)

You said it was the same for you, noticing it--you said you looked at a pic of you earlier with eyebrows and noticed the loss, then the hair loss slowly crept up on you. It's funny how it wasn't noticed at first.....

Glad to hear you've had SOME success with cortisone shots. I understand our type (FFA) will never grow back--is that what you were told? I never knew anything about alopecia--only that it happened to a VERY small percentage of women--and I figured MY hair and my mother's was so THICK, I'd NEVER have to worry about that (HA!).

After reading about it, I tend to agree with you, that what we have may be better than random cycles of hair loss and regrowth. I DO want to tell you that from your pictures on this site, if you hadn't said you have hair loss, I'd never have quessed it!

Since May I've been flip-flopping between depression, denial, and thinking about all the cool wig styles I can wear. I've got to watch it or I'll start obsessing about it--after all, it IS only hair--I could have something worse, ALOT worse. But obsessing over it will just make me crazy or, like you said your husband said, craziER! My husband would say the same thing.....see, we have more in common than just our FFA!! :-)

Sorry this was so long!
Jan

Hi Carol!

I tried to write you before, as I read where you said you have frontal fibrosing alopecia too, but I had problems replying through the website. There doesn't seem to be many of us, in fact you're the first I've talked to that has it. I have not been diagnosed with it yet--I figured out what I have (and from everything I've read it's FFA) the beginning of May and through a referrel from CARF (Cicatricial Alopecia Research Foundation) made an appt. for a dermatologist/hair specialist at Hershey Medical Center. I can't get in to see him until the end of Sept!!! FOUR months! I've had the little red bumps before more hair loss, so I'm pretty sure of my self-diagnosis.....(!)

I just turned 58 and lost my eyebrows maybe four years ago. I just thought it was menopause and mentioned it at my next check-up. My Dr. said she never heard of eyebrow loss from menopause and just shrugged her shoulders (!!!). She did bloodwork to see if I was lacking anything and I only came back with Vit. D deficiency. She gave me pills for that and never checked my thyroid. I thought it was no big deal and went and got my eyebrows tattooed ($$$-ouch).

THEN it seemed almost overnight--the beginning of May I got out of the shower after washing my hair and pulled my hair back and noticed my whole hairline in the front and sides had receded!! Maybe an inch and a half! HOW COULD I HAVE NOT NOTICED BEFORE??!! Then I saw my hair was thin near the hairline. I figured it might have gone along with my eyebrow loss (DUH!) and sure enough, from an internet search, up came pictures of women with receding hairlines, no eyebrows, the name "frontal fibrosing alopecia" and the fact there there's actually no cure for it and the treatment to "keep it at bay" is hit or miss for each person. UGH!

Continued in next e-mail......

HI CAROL, IT TRULY IS!!!!! BUT I KNOW WE CAN COME TO THAT REALIZATION. WHAT IS INSIDE OF US IS WHAT COUNTS. THE OLD SAYING, BEAUTY IS IN THE EYE OF THE BEHOLDER IS SO TRUE, BECAUSE I AM THE APPLE OF MY GOD'S EYE.... THANKS FOR SHARING AND HAVE A WONDERFUL DAY

Hi Carol,
Welcome to Alopecia World.
Sorry I'm a little late.
Jeffrey

Hello and welcome, Carol!
How are you today?
Leslie Ann