Replies to This Discussion

Permalink Reply by Brenda, IL US on September 8, 2013 at 10:19pm

Good luck to you too!

Permalink Reply by silversurfer on September 7, 2013 at 2:03pm

Hi Michelle I too have FFA and have no arm or leg hair I now have had my eyebrows tattooed but am needing to have it redone as it was too light. My hair is receding around my ears and the front of my hairline.

Permalink Reply by Ann on October 28, 2013 at 8:11pm

Hi Everyone,

I lost most of my eyebrows and the hair near my ears first.   One day I looked in the mirror and thought "where the heck did my eyebrows go".   That was about 18 months ago.  Since I just had surgery at the time, I kept thinking (hoping) that it was the stress of the surgery that caused the hair loss.  Unfortunately, that wasn't it and the hair never returned.  Since then I noticed that I have no hair on my arms and only a stray hair here and there on my legs.   And, now receding hairline above my forehead and recent bald spots.  

I'm having difficulty finding the humor in this.  I need to find a way to cope better.   I'm grateful to have found this site and see how you all cope with this.

thanks so much :)

ann

Permalink Reply by Annie on October 30, 2013 at 10:50am

Ann, it's interesting that you mention noticing eyebrow thinning after surgery.  I've noticed that a lot of women on this site have mentioned surgeries.  I also had surgery on my wrist in May, 2012, and remember noticing that I was shedding more after the surgery.  Like you, I figured it was a reaction to the surgery.  I think my FFA probably started about 4 years ago when I had a major shed all over that literally made my scalp hurt.  My dermatologist sent me for a thyroid test, which came back normal.  The hair grew back, but I noticed that the little short baby hairs around my face were disappearing.  There was no pain or redness, and I figured it was part of the perimenopause stage so I didn't pay much attention.  My hairloss has definitely been more aggressive since the surgery.  I wonder if the anesthesia could be responsible for flareups.  Anyway, it's just a thought . . .    

Permalink Reply by Ann on November 2, 2013 at 10:28pm

I've been trying to read a bit about autoimmune conditions and it seems that some type of stressor, emotional or physical, can trigger it.  I was thinking the same thing about the anesthesia or just the physical stress of the surgery.  My surgery was to remove a kidney due to cancer, so a big physical and emotional stressor.  I'm fine in regard to the cancer, but find it ironic that now I'm having to deal with FFA.  It is so very insidious.  It seems that everyday when I look in the mirror I find more hair gone. 

I'm attending a seminar on alopecia in Boston next week.  A dermatologist considered an expert in Boston is speaking.  I'm hoping to learn something more.   Will forward any info I get.

ann

Permalink Reply by sallylwess on November 11, 2013 at 11:07pm

Ann, that is just what happened to me.  One day, putting on my makeup, I said to my daughter, "Where in the heck did my eyebrows go?"  It was just that sudden.

Permalink Reply by Jan on November 4, 2013 at 3:29am

Yes I have lost all leg and arm hair and eyebrows.  Fortunately still have eyelashes!  I've been using Nizoral shampoo twice a week and it seems to keep the irritation on the front of my head at bay, but I've lost a goof 2 inches at the front and now its going from the neck area..... Its an awful thing to get, but also comforting to know that you're not alone.

Permalink Reply by Caro UK on November 4, 2013 at 6:39am

I've lost all the hair from my arms and legs. Became aware of this about three years ago but put it down to the menopause. It didn't worry me, actually I was quite happy about it as I no longer needed to shave my legs! At that time I had no idea that I was soon to face a devastating change to my appearance that has really damaged my self-confidence.
About 18 months ago I noticed my eyebrows were thinning and at the same time I became aware that my hairline was receding from ear to ear and most noticeably at the front of my hairline which has now gone back about an inch and a half. The skin where the hair used to be is very pale and smooth. I have very fine hair and don't have enough to wear a fringe to hide the problem. I have lost most of my eyebrow hair now and have had my eyebrows tattooed, which quite a few other members on here have also had done. I am delighted with the results, but there's nothing else I can do to improve my appearance save wearing a wig as the hair loss is now very noticeable. When I look at photos of myself taken just two or three years ago when I looked young and attractive I feel so depressed and just want to cry. Dermovate calms my scalp and stops the irritation but that's all. I'm taking Plaquenil but no idea if it's helping to slow down the progress of this disease. I keep on taking it because at best I'm doing something that may help.

Permalink Reply by Mary on November 8, 2013 at 12:09am

I was diagnosed with FFA early this fall...my internist had attributed my eyebrow loss and thinning hair to thyroid instability for over a year before I was seen by a dermatologist.  The outer 1/2 of both eyebrows are gone and my hair is thinning at my temples and along the hairline above my forehead.  Now that I am aware of FFA, I realize the hair is almost all gone on my arms and under my arms.  Most of the hair is gone on my legs.  And...this is very personal, but after being shaved for surgery in Sept, very little pubic hair has grown back.  Has anyone else experienced this?  Thanks.

Permalink Reply by sallylwess on November 11, 2013 at 11:05pm

I did lose all the hair on my arms and legs.  This happened over the past six or seven years.  Two years ago, my eyebrows disappeared.  I then noticed my hairline disappearing.  I was biopsied and the  biopsy diagnosed FFA.  

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