Hi Agneta

thank you for your post. I admire you for your honesty.  I remember your earlier post when your referred to going to A&E in relation to your panic about this condition.  It helped me enormously because it made me realise that my feelings of abject horror, devastation and despair were completely normal.  Thank you.  I still have those feelings but I keep going for my partner, who is my absolute rock, and my beautiful son.  I have contemplated disappearing so that I can spare them this journey.  This forum is so incredibly supportive and is helping me to fight the fight so to speak and for that I’m very grateful.  Please keep going.  I too think you are incredibly brave. 

Hi Agneta,

I’m sorry that you are having such a difficult time with this mess. We have all been there and have ridden the rollercoaster of emotions that accompany this diagnosis. Some days, weeks even months get easier then one bad hair day knocks the wind out of you again. “At least you don’t have cancer” is a viable statement. However, I was more devastated and wrecked by my diagnosis of FFA than when I was told of my failing kidneys. I adopted the attitude regarding my kidneys that, “at least I don’t look sick” but FFA changes that bit of comfort. It’s a stupid, sad, maddening condition and I wish we all didn’t have it. Try your best to feel your best and visit here often to vent. We do understand this private hell that FFA is. ((Hugs)) to you.

Hello Agneta, and Rachel and mc, Yash and everyone. Thank you so much for all the information, honesty - all of it.

I am a complainer. I own it, and I try to complain positively and productively, so it may possibly lead somewhere. I don’t always succeed in this endeavor. Sometimes it’s too traumatic, and my thoughts just spin around into rumination. Gets me nowhere at all. But that’s what trauma does - it paralyzes. 

I’m an anxious soul, and I need a LOT of comforting stuff in my life. I also need antidepressants, and sometimes anti-anxiety medicine. It’s not a big deal, and personally it helps me a lot. There are both genetic and family history components to this. Just like my hair, there are many things that are out of my control, but can be helped a bit if I take care of myself. Given that I’m already on these medicines regularly, I’m really wary of swallowing more - like you said Rachel. 

I tried the no-gluten route but it didn’t seem to make a difference. I generally avoid dairy, and eat a lot of fresh foods. I have re-started ballet classes after 20 (!!) years. So that’s good enough for me. 

SO - My sweet and nutty husband lost EVERY HAIR on his body in 2014. Thyroid. Bald as an egg, and bald everywhere you can think of (don’t overthink it ; ) ! ). 

My ex brother-in-law - same thing. 

It’s very late here, good night to you. 

Hi Airam-FFA. Yes it is the Genome project that they are doing at Guys hospital. Hopefully we will have some news later this year. We will if they have managed to map/profile the gene responsible for this condition. I'm not sure exactly what it all entails but the doc I sa at Guys last year seemed very hopeful that there would be news relating to FFA :)

Liz

xx

Agenta, I too am sorry that you are having such a time dealing with this stupid disease.  There will be good days and bad days- but sometimes the bad days can really be overwhelming. The bad days can be made even worse when someone trying to help says it is only hair- which is easy for others to say when it is not their own hair- I know people mean well by saying that or even not saying anything and maybe thinking its better to ignore our hair loss, but it will always be there for us whether we are using "second hair" or not (love that phrase Rachel Germany)! Anyway, when it comes right down to it, is our own head, our own hair, our own feelings and there is no right or wrong way to grieve or accept the loss of our hair for any of us. 

We are here for you Agenta and for each other, I've said it before and continue to say it, I'd be lost without this group- thank you all!

Aagneta, I too am sorry you are having such a hard time with this crappy condition. It really isn't helpful when people make the comment "well at least you don't have cancer"....perhaps they're well meaning but it's so easy to say for those who haven't had the experience we've all shared.They have absolutely no idea how they would react to living with this if they woke up with it tomorrow....they just think they do!! I have read a few posts from different women over the past few years who developed FFA who said they had previously had cancer & dealing with the emotional challenges of ffa was much worse. Read "Sad in Chicago's" comment (in this group) on 20 Sept 2017 who said amongst other things......"its just a shity shitty situation, and yes I am a cancer survivor (24yrs... yea!)...but the joy of being healthy is diminished by this which came from nowhere & has no cure. I'm trying, but..." . Please hang in there Agneta, we are all here to listen to each other & can help each other get through this; I have had a bad year also (last 10 months), after 2 years of much milder symptons than the first couple years with return those awful scalp sensations/discomfort & loss from front & all around ears. We all understand the daily dilema & frustration....please keep talking to the group & let off steam whenever you feel the need..

Hi all-  Hi Agneta- I'm right there with you in so many ways. I so wish I was as brave as so many of the ladies here but I'm not. I have good days and very bad days. Yesterday I went for a walk without my hat and it started raining. When I got back in my car I looked at myself in the mirror and burst into tears. Just beyond devastating to see the changes in me from my receding hairline, the crazy texture of the hair I do have coming in, and my skin. . .oh my mottled creepy skin. . .I am 60 but I feel like I look like I'm 100 years old.

I have finally come to understand that I don't care when my family or friends say "it's only your hair?" It has been a process but I have realized that it's ok to be depressed about this, it's ok to be SO SOOOOO mad about this, it's ok to say why did this happen to me?, it's ok to have anxiety and panic about what the future holds. I lay awake thinking about my beautiful girls getting married someday and how I will handle that if I am at the point where I need to wear a wig?? I am a jeans and t-shirt girl and it makes me sick to my stomach just thinking about it. My sweet mother would tell me "Don't borrow trouble" but I have no idea how I could ever get through a moment like that, and so public when I'm a very private person to begin with.  

My girls were home for Christmas and I woke up so early every morning working to shower, dry and style my hair to keep my "secret" from them before they got up (they know and are supportive but "knowing" and really seeing my "alien" head are very different). 

BUT somehow I need to find a way to carry on with my life, we all do! This is it. We are on this planet for a very short time.  I have always struggled with anxiety/panic and I read the best thing the other day. Those of us with anxiety think about the past and worry about the future every minute but really what we need to focus on is today, just today, the next 16 hours and that's all. We all come from all over the world and different backgrounds and there is so much strength in that. I hate it but this devastating condition binds us together. in such a huge way. I am so thankful for that. Thank you, thank you to everyone here who shares their stories as we all try to navigate our way through uncharted territories. Such a lonely thing to deal with but knowing that we are all there for each other gives me strength everyday.

Dear Agneta. I hope you find happiness and calm in the little things in life. A sunny day, a beautiful flower, a cute animal, stunning scenery, wearing a favourite item of clothing, a great cup of coffee, the love of people who matter to you. While each of us is responsible for how we feel and have to make our own decisions about what we do, I ask that you keep with this group - you don't have to post anything, just read the comments. Here you can be honest without fear of judgement. We are a global group who support each other through the good and bad. Kia kaha (stay strong). 

Agneta. It is hard. I found myself staring at other women's hair at the shops, gym, anywhere and thought consistently, why me? I used to be a hair model and I think now, did I do this to myself with colors, perms. In the past two yrs I even got two perms and the hairdresser never said anything and I think, did the recent perms make it worse. 

I have a young daughter, 4 yrs old and a few months ago I decided to get my missing eyebrows tattooed. She innocently told everyone, 'my mum got new eyebrows. Look at my mummy's eyebrows'. I was embarrassed but I got really nice compliments, including my husband, about them and it gave me back some confidence again. 

I feel like crap mainly when I know I'm going to be around other people. I hate going to work as I work with feral women who have alienated me from their group and make fun of people who have lost their hair or people who are fat or even maid fun of ethnic people. I sit quietly, do my job and pray that the hours will fly by quickly. I just think - karma will get them one day. When I am home, I don't feel as sad or depressed. I avoid the mirror and do things that makes me happy- play with my daughter, sew, do crafty things and bake.

Afraid, I never had a lot of irritation on my scalp only some flaking and that creepy crawly sensation. I feel like that cleared up in about six months of starting the Plaquenil. 

Also, thank you, AnnieMay for your beautiful post and while I'm giving shout outs, thanks to you all you for your sharing vulnerability and your strength. None us want to be here but it is nice to know we are supported and not struggling alone. 

I see so many comments of people that have itchy, crawling sensations on their scalp. I’ve had none of that.   Is that a common symptom? Will I get that at some point? I was diagnosed in October. I don’t k ow how long it’s been going on. Probably a year before that I started noticing. My hair is receded behind my ears now. So I have grown out my bangs & that can cover that up pretty good for now.

Hi Donna, I have been wondering about the itching and sensations too.  Sometimes it feels sore or tender around my hairline.  Flaking is present but not extensively and not permanently. As for sensations, well maybe sometimes but I haven't really taken much notice of it so it can't be too bad for me/at the moment ( who knows).  I started losing my brows approx. 5 years ago and have probanly lost an inch all around, less near the ears I think.  I haven't been to the dermatologist, I diagnosed myself in Nov. 2016 after having lost my brows completely,  hair on extremities and having reoccurring 'rashes at my hairline.  

I don't really have, actually never had any irritation or itchiness on my scalp/hairline- I have also lost about an inch all around and definite thinning on the top and somewhat thinning through the the rest of my hair.  

My brows are very thin and sparse and have also lost most of the hair on arms/legs.  I got my brows done last fall, it was The Best Thing I've Done, I love them! 

Back to the the itching, my itchiness and (what feels like little swollen bumps) happens on my forearms/wrists where it is definitely a creepy crawly thing, like something is burrowing into my skin that makes it itch so bad at times to the point where I actually draw blood.  

I worry about my nieces, as I apparently have "inherited" this from my mother and it would be awful for them to go through this too. 

No real itchiness here either. The CARF site explains pretty well that there are different types of scarring alopecias. I am not sure I have the lichen planipolaris which seems to include itching and sores - but my dermatologist classified me as having this. What I do have is a strange numb sensation where I’ve lost my hair (due to scarring I guess). Like Minter, I have about an inch gone in a band around my face, thinning on top. It’s also worse on my right side, where the hair loss is accelerating behind my ear. I notice that I don’t need to shave my legs as often. The hair on my forearms is also much less than before. But no other weird feelings (aside from my general weirdness ; ) ! )

So far, my eyebrows seem okay though I worry my right eyebrow is thinning more at the end. 

Last spring I had bouts of eczema that drove me nuts, but not so much now (knock wood!). The dermatologist told me to watch the make-up...

I feel better emotionally though. We recently moved to a bigger town, and I started ballet classes again after about 20+ years of stopping (since my first pregnancy)! I love our new life, I feel healthy, and this hair thing won’t stop me from dancing ; )

For those who have lost their eyebrows, what are you doing?  Do you just pencil them in?

ChristyQ: I’ve had my eyebrows microbladed (permanent cosmetics). Look up a technician in your area who has great Yelp reviews, client testimonials and posts their work online. Compare and contrast several as they all have a “style” though subtly different. Ask questions-and they should happy answer all of them.

it was the best thing I’ve done. It gave me my face back. Mine have faded a bit by they still remain a great base for powder and pencil.

ChristyQ, I got mine microbladed about 3 months ago and it was the best thing I ever did- they were always a light strawberry blonde anyway, but when they started thinning- it became a horrendous chore each morning to try and pencil/powder them in (along with getting them tinted every few weeks) and then checking all day long to make sure they were still there!  When I finally got my brows done it gave me my face back too :-)

If this is what you want to do, do lots of research, check reviews and ask questions, find a technician that you are happy with, don't go by price, go by quality!

Crap! Woke up this morning with a pimple in my hairline and the white pale skin border around my face is really tight and awful looking. Not sure what triggered it (do we ever really know?!?) but I am not happy about it. Skipped my usual castor oil scalp massage on Thursday...or too much bread?!? *head*desk*

I haven’t been perfect in putting the minoxidil and clobestal on my scalp - maybe like you illustr8r with the bread- it doesn’t change that my hair is being chewed up and spit out from the inside out, it would seem. I really appreciated the video explaining the problem on the CARF site, because I don’t often (only once or twice) see a tell-tale pimple. Otherwise the scarring is going on too deep in the follicle to be apparent. The weird part for me is the numbness where the hair is gone. In a few months, headbands... meanwhile am getting on with my life pretty well. Thank goodness for dance class, and my family, and a LOT of therapy. In that order, LOL? Oh yeah, and novels and audio books and cats too. But cats first. In France bread grows your hair, so eat bread from here. OK tired. Do not hurt your head on your desk, ouch.  ; )

I feel you illustr8r. I recently responded to someone's post telling them I thought the Dutasteride was working and that I hardly use Elidel anymore because I don't have inflammation. I apparently forgot to knock on wood because less than a week later and I'm seeing a return of the little pink dots around my temples. The skin on my face is really starting to get to me too. It's faintly bumpy and rough along my temples and jawline and my forehead is bumpy and shiny but not greasy at all. The skin around my temples too appears to be getting crepe-y. I was looking at pictures of myself from just a few years ago and admiring my complexion. It really was one of my nicer features. I wonder if the skin every goes back to normal if this stupid disease is snuffed out? Ugh..I'm pretty much just venting. On a different note, Halfbakedwho, you sound so much more at peace now than when you first starting commenting. I'm glad : )

Hi Christy Q. I got my eyebrows tattooed and it was the best thing I ever did. Just wished I had done it sooner. I wanted to get them micro blades but was told it wouldn’t last as long and due to me losing nearly all my hair a blocked eyebrow tattoo was the way to go.

I was a bit nervous at first as I felt like a freak as I felt I looked like one of those vantriloguist puppets but once it starts to peel, within a few days, I loved it. 

I swear if I have an inner dialog that says, “Hey, your hair looks okay today. Not too bad all things considered. Well, good. Off we go!” Soon after I will have a bad hair day that triggers a new dialog of self doubt and woe is me. I hate this stuff! I’m going to get the Clobetasol out tonight-haven’t needed it for months. Dammit.

My only positive is it that I no longer have to shave my legs as I lost the hair on my legs and arms as well.

Is is a curse? Why doesn’t the hair in the areas that you don’t want still be there. Crying That I have lost the hair in the areas that count most (head and eyebrows) but still spending money to wax and laser the hair in the bothersome areas which the hair is thriving.

Everyone seems to retain their humour despite this silly condition.  Well done!!! We should compile a list of things that are helpful in keeping us going?!  For me apart from my partner and son, my ‘therapy’ is yoga, a dance lesson, hypnotherapy, guided meditation, walking.  I am managing at present with ‘hope’ that plaquenil will kick in and save the day (although deep down I realise this will probably not happen).  I also can ‘hide’ the loss so I celebrate having my hair but I have no idea what I will do when I am in fact bald....

my question today is.... does anyone experience constant hair fall?  I run my fingers through my hair and full strands of hair fall out or it simply seems to float down from my head just as a reminder (as if I could forget) that my hair is disappearing :-( 

Oh big hugs to you Illustr8r. I hate bad hair days too. BUT- no one thinks our hair looks as bad as we do ourselves. @ Yash - I know - I barely ever shave my legs. But other things have hair - hmmmm. Why does this disease pick and choose? Do I really want to know that? 

@Afraid I always have hair in the sink, some days more than others. I never know if it’s more or less than “normal” people or not though. My hairstylist tells me how I am doing in that regard and she’s been positive of late. I know it’s way better now than my flare a year ago when strands would float down in front of my face. 

Yes, a sense of humor and a fine selection of curse words is needed to manage this condition!!! Dammit.

Hello Afraid. I really don’t want to go the Plaquenil route either, but I’m not there yet. I use humour as a defense - I hope rather well sometimes, other times a bit forced I’m sure. I obsess over my eyebrows, which some days I think are thinning, other days I think are fine. My own judgement isn’t reliable.

My hair is so crazy thick and curly, that it hides the spots that are going in the front. No, I don’t see hair going in the shower, etc. - that is not, apparently, the sort of alopecia I have. I see more thinning and small bald patches in the front, that’s eating its way back in a band around my face. I’m most self-concious about my forehead which is getting larger. 

Now- if I seem to have a bit of distance and equanimity (« seem to » being operatively important!!) it’s probably also because my husband has alopecia areata - NOTHING left on his head or body. And he really, really doesn’t care, which is why I love him (he’s not an appearance kind of guy). Not that I want to go that route (please!!). But he’s happy, he’s willing to add all the hair-crap I need to our budget to look okay (in other words really supportive), and only worries that I worry too much about it. Even my sons hug me and say, « we will love you when you’re an old, bald mom » which just makes me laugh. 

I take heart from you guys and everything you share. I tried the no-gluten no-dairy, but can’t easily stick to it, and my dermatologist and doctor were very non-committal about its impact, so - « bof » as we say here where I live. I love your solutions for covering it - and though so far so good (knock wood) am keeping a mental inventory of what I’ll do in a few months (or hopefully a few years) to look okay. 

I try to keep my face and body as well as I can. I love my work, have good friends, a great family and two cats (again, is the order important here ; ) ? ) Now this doesn’t mean that in two weeks or two months I won’t be on this forum completely devastated by this weird weird illness, and my strange new head. But I’m okay today. I’m off to a language class this morning, and a writing group this afternoon.

But I’m also a fake extrovert, a dysthymic double-depressive, and anxiety has glued me to my bed a few times in my life. But when that happened - it had NOTHING to do with my hair. So all this to say - I think I have to fight for my life - or to be more clear - the LIFE in my life, if that makes any sense. 

Sunday morning nombrilistic ramblings that hopefully gave some of you something - or else it was all for and about me, which I suppose is okay too. Take very good care. 

Thanks so much Halfbakedwho & Illustr8r!!! Have a wonderful Sunday x 

@ Jess - yes I am better - it was such a friggin’ nightmare after the diagnosis - I suppose it’s like that for everyone. We see these horrible images on the internet, we hear « progressive and permanent » - I found out about myself through an e-mail sent by a clinic (I’d sent in pictures of my hair). I was in a ladies’ room stall, right after a work meeting. You see the image - I won’t go into details. My heart started pounding, and I called my mom. And promptly went shopping. Then came the sleeplessness, thinking it was a dream, a mistake... this was only just last spring. I have lost more hair since then, and wonder how I could have stayed two years in denial - at this point it’d be hard to maintain. (Denial I mean). And I only went finally for a diagnosis because a hairdresser insisted, and I was admiring a woman’s thick curly hair in a store, thinking of my own... 

I have taken up enough space here for now - must start my day. 

Hi everyone, something has been busying my mind over the last few days...loss of eyebrows!  Now to be honest I've been occupied with my eyebrows about four and a half to five years now but what interests me at the moment is the fact that my total eyebrow loss and leg and arm hair loss happened before my hair loss whereby most of you lovely ladies still have some or all eyebrow hair.  Is there anybody who is experiencing the same run of things as I? Also, I would like to tell those of you who are going through the eyebrow loss experience, it my feel like the worst now but you can learn to fake them and people will not notice.  There are so many good products on the market and for swimmers and surfers there is a clear sealant from 'Bald girls go to lunch'.  I went snorkelling with it on my last summer holiday on Crete.  If any of you is having a hard time with your eyebrows please don't fret.  Check out Carly Severn on the internet, she's an alopecia and one of the most attractive young women I've seen...check the eyebrows...they really are painted on!!! Have a lovely day and think of one thing you're grateful for before putting your phone down now.x

Hi, Rachel. I actually lost all of my eyebrows over the course of about 18 months before I noticed any hair loss on my scalp. I kept thinking it was a phase and they would grow back, but after about a year, when they were nearly gone, I decided to get my thyroid tested. My thyroid was fine. One day, I noticed that nearly all the hair on my arms was gone, too. I went to a dermatologist, and she seemed rather indifferent about it all, and told me my eyebrows didn't looked scarred, and that it's hard to tell what could cause it or if they would grow back. She gave me some latisse and Elidel. Well, of course, I wasn't satisfied with that and spent my night and days scouring the internet looking for answers. I came across FFA a few times, but didn't give it much though because I didn't think I was losing hair from my head. In the meantime, someone pointed out to me that I had a couple stray hairs that seemed to be growing out of the sides of my face around my side burn area. Upon closer inspection, I started to question if that's where my hair actually used to extend to. I also looked more closely at my hairline and realized there was some paleness and little pink dots around the the fronts of my ears and temples. Another person commented that the skin on my face kind of look like a the texture of a basketball in certain light (that's always nice to hear). Well, I continued searching about eyebrows and came across an article about eyebrow involvement in FFA, and how it's extremely common. They typically fall out on the outer ends first and then the loss proceeds inwards, just like mine had. It then listed all the accompanying features of FFA, paleness, lonely hairs, papules, and ding, ding, ding- I realized what I had. Of course, I was horrified. Anyway, a few studies I've read have correlated eyebrow loss, particularly as the first sign of FFA, with less severe prognoses. I guess a simple yes or no would have sufficed, but there's my story, lol.

Oh, as a follow-up, the same studies showed that body hair involvement was correlated with more severe prognoses. Since I lost all of my eyebrows first and also have body hair involvement, I'm not sure where that leaves me.

Hi Jess, thank you for your story.  I too read in a study that initial eyebrow loss correlates with less severe prognosis, but having lost the hair on my extremities who knows. My hair loss seems to be very gradual (touch wood. I drink a green kale smoothie with lots of turmeric(don't forget the black pepper) and fresh root ginger everyday.  On the days that I don't manage the smoothie I then take turmeric capsules. Every few months I take a course of milk thistle capsules and of course I have done some gut cleaning with lactic acid products in some extremely good pre- and probiotics. Oh and In winter I take cod liver oil. I don't take any medication, but do often think that a merina coil that I had for less than a year was likely a trigger for ffa.  Jess, how is the progress with your hair line? Have you had your brows microbladed?  

Hi Rachel and Jess. I too list my eyebrows and most eyelashes first, and leg hairs. Then my head hair. Funny thing I never thought about my arms and have just checked them - you guessed it, no hair - haha they have probably been that way for years. Like others there are body parts were the hair remains for some dam reason - no justice. I am a pretty positive calm person but sometimes wonder if I internalise stress rather than letting it out. Go to the gym 4 days a week unless I'm having a lazy week or too many commitments get in the way.  Try to eat well but like food so am no model, and love good chocolate, good cheese, pasta, oh really just about anything. I haven't cut out any food types and don't take any pills or medications. Have never been into that sort of thing. When my eyebrows fall out I just left them that way. Have never really worn makeup so had no hope of competently drawing them on each day - it would have been a disaster. Am finally investigating micrblading or tattoos, though to be honest am not particularly worried. What I do find is that when I don't put my wig on, having a bald head means I accidentally head butt cupboards, etc. Without hair in your periferel vision you don't realise how close you are until donk, it's too late. Right best be off to bed. Nearly midnight and still need to iron clothes for tomorrow. Then again, the Australian tennis open is on TV and it's always addictive watching - looks like Djokovic might loose.

after all my positivity of late, tonight (Monday night here) I am feeling obsessive b/c it's harder to cover my forehead, and the bald spots on the top of my head are getting more apparent (at least to me). This sends me googling for solutions. I think "okay, headbands" but my hair is (not to belabor the point but still) so thick and curly that what's left poofs out of the sides and the top of the headband. Think Ronald McDonald with a headband. Noooo. Then another thought - f--it I will go back to blow drying my hair straight and THEN I can wear a headband. Dermatologist doesn't want me to do that, but if my hair is falling out no matter what she says to do, then who cares if what I have left on my head is straight and not poofed out? Conundrum. I look like a poodle with a large forehead these days. 

Hi Helen, it's wonderful that you love food...one of the joys of life!  And going to the gym 4 days a week is something to be proud of.  Internalizing stress is something I can relate too while being calm and positive and giving others strength at the same time.  But we are the way we are and maybe we were born with the plight of this syndrome(I don't call it a disease).  So at the moment I find myself thinking what the Hell.  If something feels good then I eat it /take it and otherwise leave it.  Our lives are so precious and short and this condition leaves us feeling out of control which lessens the joy of my life so this is what I am working on...feeling in control, feeling thankful for everyday with my family and the wonderful people in my life.  I have definitely found that turmeric has a great impact on my mental state and there are many studies to read on the internet as to It's benefits, which are very diverse.  I'm a naturopath here in Germany and through my journey since ffa I have gained so much additional knowledge of both the human mind and alternative remedies and have had the pleasure of supporting so many wonderful people with problems much more serious and life changing than mine.   I do not ask myself of the cause anymore, I just want to get on with enjoying life and when I read your posts I feel at ease and can hear your positivity at a deep level.  I hope you enjoyed the Australien tennis! I am just in the process of planing a trip to Sidney next January to visit my oldest and best friend who I haven't seen for ten years, so It's nice to hear from down under...it makes me feel a little closer to my friend...like the world isn't quite as big as it;)

Ah the irony @HalfBakedWho! I have stick straight hair and would have killed to have a head of wavy curly hair! Now, I am happy with what is left of my stick straight hair and the gray too. 

I have no style options for you as I've no experience with curly hair. Have you done any image searches for " curly hair, high forehead" just to see what comes up? I did that with my "thinning straight hair, short haircuts" and ended up with my so far successful pixie.

Hi Halfbakedwho, poodles are characterful, intelligent, instinctive and concentrated...sound familiar?:)  I'm sure you will find the right way to wear your headbands, otherwise let's think about setting a trend with the turtleneck, cape, sword and turban...we seem to be well based  here in the forum and could cover the trend internationally!;)   I do hope your feeling a little less obsessed, if not vent it out here.

That’s an excellent idea illust8r ! And thank you to Rachel for those hopeful words which help tonight. I feel like I’m getting to know you all better here which helps. Thank you also Helen for your positivity. Yes life is too short and I hope to have a few more good years left with or without hair... I did break down and order a headband but I have to see how it can work with my hair. Bonne nuit les cocottes. 

Halfbakedwho, good luck with the headband search- you will find the right one and it will look great with your hair, you are in France after all!   I have a collection of headbands (stretchy gym ones) & scarves but no matter what I try I never look good or comfortable with one on- I may start wearing a beanie instead ;-) 

Rachel, I love your words and I will try to keep them close when my hair gets me down, life is precious along with whatever comes along with it. 

Illustrated8R, I'm on pinterest and google all the time looking at hair styles- my new thing for little while was the undercuts, I was in Poland a month or so ago and saw women rocking undercuts over there, they looked great so I was thinking since I already have an undercut started on the sides in front of my ears (not by choice but thank you FFA)  maybe I will make this FFA "fade" work for me haha! But I am not quite brave enough to do it and worry that my hair is too thin to pull it off :-(

@Minter Those undercut looks are awesome! I might still be able to rock one of those but I'd have to use a lot of product in my hair to complete the look. I have BuzzCut hairstyles bookmarked- along the same thinking, fade the hair loss on the sides into a buzzcut. 

Rachel, the loss hasn't been too bad. I've lost most of my sideburns and about a centimeter around the sides of my face. My side hairline also looks thin and uneven.  Additionally, I lost my "widow's peak." It really wasn't a true widow's peak, but a small group of hairs at the top middle part of my forehead. I haven't done microblading but may in the future. I just draw my eyebrows on everyday, which is a pain. The thing that keeps me hesitating (besides money) is that I wonder what happens after years and years of having it done? The technique seems fairly new, and I wonder if the skin would atrophy or something after being tattooed every two to three years over a twenty year period. I may post some pics of my loss a little later. Do you think your regimen has been effective in slowing the progress?

Hello all.  I have been checking in, but found our discussions of the same nature I have shared with you for sometime now and didn't feel the need to participate. But tonight I really got a big blow.  I noted sometime ago that some of you had loss at the nape of your neck, which somehow I avoided thus far and thought, oh no, this cannot happen too.  But, I mentioned to my hairdresser and wig/piece specialist that the bottom back of my hair was not laying properly as I was there to visit her for a trim, and she noted, I cannot believe this! that I am starting loss there too.  We are able to cover it for a while with clever shaping but it means all my styling needs to be shorter and I, even tho I have two peices I alternate with, feel like I am back to square one.  My loss at front and sides is worse than ever and now this.  I am beside myself.  Every time I feel like I am handling, dealing, learning and moving on a bit, something else with this horribly stupid, irreversible disease shows up.  Yes itchy, no scarring, some occasional little bulbs, irritation from tape, thousands of dollars spent, and on and on.  This has altered my life from one of freedom to sadly dealing as best I can but never feeling like I will truly be myself again.  The worry, concern, constant attention to the details of it and trying to look like I am wanting to and am supposed to everyday is wearing.  Thanks for letting me vent.

I’m feeling great this week apart from the fact that I have to work with bullies. Could be that we have a three day weekend for Australia Day but my hair has looked good all week. Couldn’t believe it. Felt like my old self. Mind you that will change - nothing lasts. 

Im contemplating whether I should dye my hair. Haven’t dyed it for over a year now and a few grays are showing. 

For those who still dye their hair, have you gone lighter in shade or stayed the same 

Sad in Chicago, I am so sorry that this is happening to you now on top of everything else this stupid disease does to us- with FFA, it seems every time you feel like, ok- I've got this, I can deal with this- it turns around and slams you with a new thing to deal with. It isn't fair at all and yes, yes, yes, it is only hair blah blah blah, but it isn't only hair when it is our hair, this sucks and you have every reason to yell scream or whatever you need to do to feel better!

Yash, I get my hair colored, every 2 months or so ( I should do it more but I get lazy and forget)!  I usually just get the roots done and she "pulls the color through"  I have strawberry blonde colored hair and I get my roots colored darker, almost a dark brown because if I have a lighter blonder color it looks much thinner and translucent- there are a couple of pics on my profile page I think you might be able to see the color even though my hair doesn't look great that day, the color does ;-)   

Jess,  those pics are my before and after the day I got my brows done- It was over 3 months ago and I LOVE my brows! I used to have to draw mine on every single day and along with checking the mirror for my hair I also had to check to make sure I still had brows, now it is one less thing to worry about. I do still use a little brow powder, but that is only because I have very little brow hair so it can look a little shiny- but using a little powder each morning is nothing compared to the (sadly lacking) artistic talents I had to rely on to do my brows before! I honestly don't know how microblading "long term" would affect the skin, but since my skin is shot now because of this stupid disease, whatever microblading does to it is minor compared to how good my brows look-

illustrated8r, my hair is so limp without products- funny I never used hairspray or much of anything before this, now I am lost with hairspray and root boosters and hair powders et al... I think I am just going to end up going shorter and shorter and shorter until there is nothing left and then I'll be like why didn't I do this sooner!

The lady that did my eyebrows was on the news. Just thought I'd share, especially for those who are thinking about microblading. Again, the best decision I've made in dealing with FFA. Gave me my face back! :)

http://klewtv.com/news/local/klew-investigates-microblading-the-dee...

Hi illustr8r 

Thank you for sharing the video clip. It makes it very clear that you have to make sure your Microblading Technician is properly trained and experienced. 

That is what has been putting me off - What if they do a ‘botched’ job. 

xOx

Hellooooo! 

thanks again for the sharing of information, advice and support etc.  Each week/day/hour as this condition progresses  I’m not sure I can manage the intensity  of emotions which range from gripping anxiety to self imposed  exhausted ‘calm’.  I am currently taking steps to gain back some control and looking into buying a wig.  Can anyone recommend somewhere in the uk where you can buy a fabulous wig alongside knowledgeable experienced and sensitive staff?  My experience this week using a salon aligned with ‘ mynewhair’ was shocking...I won’t bore you with the details but considering the courage it takes to walk into a hair salon to then be treated in such a way does make me question the guiding principles, values and motives of a celebrity hairdresser introducing this notion and hair salons adopting such a scheme.  Perhaps I was incredibly unlucky.  I thought it would be interesting to try and give some feedback directly to the celebrity hairdresser more so as a ‘critical friend’ however, my email was forwarded directly to someone within the charity who advised speaking to the owner of the salon (who was there at the time!) and/or fill in a lengthy complaints procedure and forward to a PO Box Number.....! Hey ho!!!  Another day begins..... and determination strikes again.....

Thank heavens for this therapeutic ‘space’ and circle of support. 

Afraid, I don't know of any wig salons in the UK, but I do follow this site and they seem to have a great deal of good advice about wigs and wearing them and all that is involved-  

https://www.simplywigs.co.uk

That is awful that you had a not very good experience at a wig salon and I think it is good you are following up on it- taking that first step to go someplace like that when you are feeling so fragile, a salon has to have good people working there to take good care of people going through not good times because of hair loss. 

I had a wonderful and sensitive experience at 

Shepperton Wigs, they are close ish to Heathrow airport

http://www.sheppertonwigs.co.uk/

Jo and Linda really put me at ease, I was terrified when U first went there . Super happy now with this one:

Ellen Wille Prime Hair’ model ‘Impulse’