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Comment by Wyobalance on July 30, 2017 at 2:16pm

It seems we focus on what is obvious and easily seen like above our forehead.  Meanwhile the scarring alopecia is doing its thing somewhere else, like the back hairline.  I also now notice some loss there.  However, I've always had a mild itch when I leaned back on the sofa, so I figured something was going on there too.

I haven't had obvious dry eyes, but very dry skin on my hairless arms, and to be hairless legs.  Dry like from the inside out, if that makes any sense.

Comment by Liz on July 30, 2017 at 1:28pm

Hi Classical Anne. May I ask what you use for your dry eyes? and has anyone made a link between your dry eyes and your other autoimmune diseases? I spend a fortune on the various dry eye drops and I'm wondering if any work better with this condition than others. I seem to get some limited relief with the ones I use. 

I have 1 or 2 hairs on my arms now and they have grown in a zigzag fashion like they've been singed!

xx

Comment by Classical Anne in NC mountains on July 30, 2017 at 12:06pm

Wow!  Amen to all of you ladies with these recent posts about nape hair, etc.  I too have noticed that back hairline rising, and yes, my skin feels more sensitive.  In fact, the skin on my arms [where there is now not a single hair] is now more irritated with certain fabrics.  And my dry eye issue sometimes drives me mad!  Because I also have AGA [female pattern baldness] I no longer have enough hair on top even to clip in bangs, much less a full topper.  It's full wig or full scarf in public now, or a cute hat.  Happily, at home my sweet husband is OK with just me, as he knows how much my wig or even scarves irritate my scalp.  But I positively AVOID the mirror, because I hate to see my patchy head.  It truly is a cruel trick of our immune systems, even though we all know there are far worse things to battle in life.  My latest specialist [gastroenterologist] is fascinated with my array of autoimmune diseases, and he is head of the research dept at his practice.  I have two procedures scheduled with him in mid-August.  Maybe one day soon we can connect the dots.

Comment by Liz on July 30, 2017 at 6:44am

Hi Sallylwess. At the moment I have an intralace system which I have had for about 18 months. I like having it as I can go out without worrying that it'll blow off in the wind and it looks good. It is expensive so I am looking for a cheaper option in the future. Also if my hair keeps disappearing at the rate it's done over the past 5 years I'm not sure what the system will attach to in years to come! My mum also has FFA and she wears a wig which looks fabuous on her.

Sad in Chicago, it is such a bizarre disease isn't it. I wish there was more awareness of it. My mum has it too and we joke that we must have walked under a toxic cloud some years back.

Jacq. I started a new job in January and have to wear a top with a collar. The collar really irritates my skin, something it would not have done prior to having FFA. The skin on my face has changed too and I have very dry eyes. I'm always having to use lubricating eye drops.

xxx

Comment by Jacqui on July 30, 2017 at 4:11am

A reply to Liz - I don't know how to reply to your comment about hair loss at the back on the comment wall!

After getting scalp injection last month, the nape of my neck has been really itchy. My derm checked before doing the second round of injections but could not see anything but there is so something going on. I can't stand scarfs or high neck lines now as they irritate :(
Jacqui

Comment by Sad in chicago on July 29, 2017 at 8:44pm

So far no loss there, but the forehead and particularly the area around my ears and back from my face have increased loss.  I will never understand this, ever.  In my life of all the things that could have happened to me (and I have already survived breast cancer) would I imagine such a bizaar and utterly no words for occurance, disease, whatever you want to call it, happen to me. It makes no sense.  

Comment by sallylwess on July 29, 2017 at 6:16pm

Yes!  I noticed about six months ago that I was losing on both sides of the nape of my neck.  I noticed it when I accidentally saw the back of my head in a double mirror.  I never look these days.  I felt the area and was able to feel the scar where hair had once been.  It is so frustrating. I don't know how much longer I will be able to wear the toppers I have now.  Liz, do you wear a wig all the time?

Comment by Liz on July 29, 2017 at 5:24pm

Hallo :) Just wondering if anyone has lost hair from the back of their head? I've lost a good (bad) few inches from the front and now if disappearing from the nape upwards. I don't really care as my hair is now beyond anything that resembled a decent head of hair but am just curious to know what's happening to everyone else xx

Comment by CurlyK on July 27, 2017 at 10:02pm

LisaD, funny how we all have such similar symptoms. A few years before I was diagnosed with FFA - before I really even noticed hair loss - I was diagnosed with blepharitis. Ophthalmologist told me to wash my eyes with baby shampoo and put a damp warm washcloth over my eyes at night as I fell asleep. Worked really well. He also told me to wash my face with the shampoo as it would help with the rosacea he saw developing on my face. I have used baby shampoo to wash my face every day since! I still struggle with my dry eyes but it's naturally worse since I work looking at a computer all day...

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