I am getting the message that this place isn't secure also, but also here anyway- Is there a way to report this? 

Halfbakedwho, I am so very sorry that you have discovered more loss- especially in the midst of living & working in different places & now having to find a different doctor, you have enough to go through.

Hi everyone- I am also getting the warning that the site isn't secure. I can't even find a workaround on Safari or my iPhone to login in. I got in using Firefox and didn't get the warning. An overprotective Apple thing?!? Anyway, having a "bald" day, my hair feels super fine and wispy. Had a bout of insomnia and hot/cold flashes so it's all just a pain in the butt.

I sent a note to the site Admin about the not secure/fraud missing certificate warning we got. Now, I can get in AOK on my iPhone with no problem...so ?!?

Sadly, after months of feeling 'at peace'' with my slow hairline recession by closing  my eyes at the hairdresser, not obsessing in the mirror and making less and less trips to the dermatologist ( who hasn't prescribed anything that works anyway) I took a good look this evening after a shampoo and was stunned. it won't be long before I need to work on a new hairstyle to hide the loss. It's so ugly. I feel so angry....what's so damn hard about finding a cure for this? I think it's not worth the money for pharm  companies to put millions into research when they won't make that much money on the treatment. Better for them I guess to stick with high monetary returns from the likes of Viagra, flu shots, diet pills, and every antihypertensive under the sun. Ugh, infuriating. 

@Beez I miss the weight of my hair. I feel exposed all the time. Right now is the worst time for my hair, a week before a haircut. My stylist cuts down my good hair so there isn’t as big of a demarcation between thin and normal. It blends well but after 6 weeks the good hair is poofy like everything is fine and the thin wispy front continues to shed/recede albeit slowly. My haircut looks intentional but by no means do I feel like myself. Damn frustrating.

Hi Beez, feeling for you, I'm still in deniel..alas I also had hair appointment this am, my daughter is getting married in 9 weeks so I'm in limbo land regarding treatment's, from what I've read nothing is a sure bet, it's deciding between a 50 % chance of halting progression, ? Side effects of drugs, no it's not life threatening but devestating, 

I SO understand Beez. I just had my haircut and it was devastating to see the look on her face as she tried to style my hair differently. No words. . .I looked back at so many posts here when I was first diagnosed and we are still all asking the same questions years later, dr's are still grabbing at straws trying to find something that might help. Makes me angry too. . .Yes it's just hair and that is hard enough but for me it's my skin that is the most devastating. Even if I have to wear a wig at some point there is no way to hide my skin. . .

Is anyone one using closbestatol right now? I copied & pasted the paragraph below which I found,  I’m a bit concerned that I will have been on this medication for 8 months by the time the doctor wants to see me again in May.  

Clobetasol propionate is considered to be very potent; because of that, it's not recommended for use byond a few weeks or for an extended period of time. Clobetasol propionate is marketed under various names in the United States; Clobex, Cormax, Temovate and worldwide; Tenovate, Dermovate, Dermatovate, Butavate and, Movate.

@Donna My family dr was surprised that my Derm handed me a bottle of Clobetasol with little instruction. I was using it maybe 3 times a week as “maintenance” and she insisted I stop completely for 2 weeks. After that, only as needed for really bad pains/itches. It thins the skin but she was very concerned about it’s effects on the liver. So, I don’t use it at all now if I can help it. I have a big bottle of castor oil instead.

All these drugs...and none work for sure and they all have scary side effects. It sucks.

Hello, I have been suffering from alopecia for a year in the beard and after a conflict I recovered from them but I started to reappear what is the solution?

Hi everyone, it’s good to see you all back here. It’s maybe small consolation, but to hear that everyone is going through the same BS with the doctors and drugs and styling makes it a tad less awful, in that I’m not alone. I use my freaking Clobéstal (français) every damn day. Now I’m putting it at the nape of my neck too, where I feel the hair going. 

So - illust8r and Beez and AnnieMay and Minter and Plf... and welcome ahmed... I am just soooo glad you are here. I too miss the weight of my hair, the intensity of my big fat curly hair that I could get pretty long, once upon a time. 

Here is the strange new annoying symptom of the day (and it’s only 9AM!) - my glasses are bothering me, above my ears where the hair is going. It’s like the plastic is irritating my scalp there. I can’t tolerate my contacts all day anymore b/c dry eyes. 

I am going to try a new dermatologist, because my normal lady is only available ONE THURSDAY MORNING a MONTH. In Freaking Paris. So I am going to Dr Famous Man who has written books on alopecia, and does grafts. However - mixed Google reviews - apparently Dr FM has an Ego. Why does this not surprise...

Snow here today, everyone is late, not a bad thing. I’m going to Not Look at my Hair now. Bises, chicklets. 

@Halfbakedwho Good luck with Dr Famous Man! Do let us know ;-)

Ah lovely to hear continued camaraderie!  I couldn’t access site either due to warnings...I also had a private message from someone on the site last week saying they had something that would be of interest to me... i can’t tell you the irrational, illogical, crazy thoughts that ran through my mind... mostly centring around potential cure/magic wand scenario...only for it to be non hair relate and a fraudulent scam requesting money!!!  

Keep going everyone.  Can’t wAit to hear about dr FM :-)) 

I keep getting that same message about the site being not secure but today I got on with no issues at all. Glad to I wasn't the only one. I hope everyone is doing well. 

Short story.....went to the emergency room about a month ago thinking I was having a heart attack!  Good News!  I wasn't!  Anyway, it was VERY stressful to say the least and I just KNEW my hair was going to take a BIG hit because of the stress.  Sure enough, 4 weeks later and I'm in bad shape.  I have been SO steady for the past year and that darn stress episode got me all screwed up again!!

Hello all, this is Sad.  I have not been stressed -- only specific stress of late is extreme loss of hair I am experiencing again.  I don't get it.  As I said a couple of weeks ago, now noticing at nape of neck as well, plus forehead and sides of head  immensely diminished.  Beyond horrible and such a frightening site when not wearing anything.  I simply cannot stand it.  It has taken all the fun out of anything like being outside, going on vacation, being spontaneous, etc.  I know you all relate.  I have been thinking about bonding so I don't need to wake up and look at myself and go through this everyday before I get "dressed" as I call it, which includes adding my piece.  However, I am so anxious to get it off at night, the itching, the tape, the discomfort leaning back against a bed rest or couch where the clips in the back of my head are, that I cannot imagine something like this glued to my head for any period of time.  I might discuss with hairdresser/wig/piece person I go to again.  I trust her.  This is soooooo hideous and beyond stupid, I can't stand it, I don't know what else to do, and the joke is that when wearing any of my pieces, even tho to me they look "wiggy" sometimes, I receive so compliments on how well I look when I am out in public.  I know it shouldn't matter, that it is nothing more serious, that since I look well I should feel well, but....not happening!

to MnM - do you really need names in Chicago?  I have two, Jerome Kraus and Salon for You.  I also went to the Hair Institute on Washington downtown, but that was not for me.  

 Sat in Chicago, I identify with your fear and frustration. I have worn a hairpiece glued to my scalp for over a year and a half now. It was incredibly difficult that first day and it took me a while to really get used to it. Most days now I don’t even feel it as it’s become such a new normal for me. It is stuck on there pretty good so I treat it like  it is my own head of hair. It has been worth every penny for me to have my self-esteem back. I receive way more compliments now than I ever did my entire life with my own real hair. It is crazy! But I love just not having to worry about my receding hairline and wondering what everyone’s thinking.  If you or anyone else decides to try this, feel free to reach out to me. Getting a head of hair was Traumatic after not having nice hair for years. I cried and cried and cried. But it got a lot better. I promise! 

* Curly K - as I have replied to you previously, your hair looks absolutely fabulous, so natural looking. I wanted to ask you if you are still experiencing any progression of hairloss since you started with glued on hairpiece 18 months ago? I do remember you describing how it was done, that they have to shave some of the head before gluing on etc& that you mentioned you haven't ever experienced much tender or itchiness * Sad in Chicago - I am sorry to hear you are having more loss & having troubles with scalp feelings. Also finding of the seemingly never-ending progression of loss is forceing you into having to reassess changes to alternative cover-up solutions....I can see how much this condition can affect the day to day lives of so many women, as it progresses; seems as tho many find a solution they are comfortable with, then nxt thing made to feel something different needs to be tried. Recently Helen (from NZ) described her solution of a Freedom wig (whole head needs to be shaved) which was working well for her....this may not suit everyone of course, but thought i'd mention it in case you hadn 't seen the post.

@Sad in Chicago- so sorry to hear of your progression. Your words echo my own. 'Beyond horrible and such a frightening site when not wearing anything'. For me, now a full time wig wearer,  it has transformed my life. Took SO SO long to accept that my own hair was never coming back, now I quite enjoy having different looks. I might also look into bonded hair but so far the wigs are working well. 
@CurlyK. are you in the US or the UK?
Very interested to hear more of how your solution works for you

One of those scarier days for me, when I notice the bald spots growing on top of my head, and worry about finding a solution to hide this hot mess. It’s progressing for me here too, and it’s scary. But what feels more frustrating right now is the lack of options for covering this up. If I could foresee a reasonable way to cover my hair with extensions that doesn’t involve too much fussing around with clips and sewing (I don’t know how to do those things) then I’d feel reassured.

CurlyK - I would definetly do what you are doing, if only I could find someone not intimidated by the crazy curly hair. Sad in Chicago - I too just noticed this past week that I’m losing hair at my nape too. My mother says « this is just so weiiiirdd » - no kidding. I don’t know if you guys have this numb sensation where you’ve lost hair? The white patches are numb.

Sometimes I am just in such denial, I think I’m making it up, or somehow I could « make » it go away. Don’t ask me what logic that follows - I really don’t know. Maybe it’s sort of like when you get a cold, and you think, « oh hell I’m going to go out anyway » and then you feel fine, then the cold is gone. I think, « nah, I’m going to make like this hairloss FFA thing is over ». Oh - but it’s not, it’s not... as if mind over scalp could magically work. But my mind is under my scalp, and the scalp has its own ideas these days. 

My pixie cut is hanging in there but I can see on my sides where it’s thinning. I look and I look again at this line between thin hair vs. good hair. This line I see-is that where it’s going to finally stop and burn out I wonder-every friggin day I wonder. I’m sad today because I saw photos of myself just 3 short years ago when I had hair- hair with bounce and elevation. Shocking how much hair I’ve lost all over. I swear this stupid condition just knocks the wind out of you some/most days. “It’s just hair”...no, no it’s not. :(

Exactly, it's NOT just hair!
It REALLY takes it out of you emotionally. I look at myself just a few years ago, looking 'normal' and compare to now, just SHOCKING.
I first heard the dreaded ffa words when I went to my dermatologist for skin allergies 4 years ago and asked her what she thought about my thinning hair at the front, she said what it could be, " I may have WHAT?"
I couldn't remember or pronounce those three words, had never heard of it so I asked her to write it down. Then I googled it when I went home!!!! WOW!
Biopsy confirmed it shortly after.
Been slowly going through all the various stages of emotion since then!
Looking at photos, I had a traumatic few years during the ill health and subsequent passing of my beloved elderly parents, most stressful time in my life. Seems to have started about that time and crept on slowly.

Same here, it is not just hair!  I often think- if it just stops right now, I'll be able to deal with the loss and be happy, just please make my hair stop disappearing right now, today, please, please, please.  But it never does, it just keeps moving along, creeping slowly over my scalp like some horror movie. The day I hate my hair the most is the day I wash my hair, because it is at it's most obvious when it is wet and freshly washed.  Once I get it dried and put all my magic potions & powders on it then I can do my smoke and mirrors thing and pretend it is not so bad.

I do think I am finally going to make the call for an appointment to give up on my my 'just above the neck long layered bob' and go for a long shaggy sort of pixie cut to disguise the thinning on the top of my head and so I can get pretend side burns cut that I can pull forward in front of my ears and use product to keep them there. My sides are made even worse because the little patchy hair that is there was shaved when I had the side pieces in a couple of months ago and it is so very slowly growing out.  But saying that , I am so sick & tired of figuring out ways to "fix my hair" this FFA can really do a number on your self esteem for sure.  Between my hair, recovering from a painful surgery and now marriage problems I have managed to gain a fair amount of weight and feel mightily sorry for myself.  This is not how I want to live my life and it is time to make some changes!

I identify so much with everything said in last few posts.  Hope you are all having better days.  In the past five months since my diagnosis I have lost sooooooooo much hair.  I’m at the stage of saying this is the last Christmas/Valentine’s Day etc etc when I will still have my own hair.  It’s hideous.  I can’t begin to imagine how much worse I will feel in the future... it’s so cruel.  There really aren’t enough positive stories to make me feel hopeful anymore. Now I’m just praying for a miracle. How do you ever move towards acceptance? 

Curley K -- with the bonding, what happens on the sides of  your head?  Is that bonded too?  So is it glued at the front top and sides only?  What happens over the crown?  Is that shaved?  What about at the back of your head.  Is it clipped in there?  I cannot figure out how it works and further how is doesn't drive you crazy?  How often do you have to go in to get it off and then on again?  Sorry to have so many questions.  I am dealing with taped  and clipped pieces.  Front and sides taped, back clipped.  Some days itchy and drives me crazy, some days no big deal.  That is why I am worried about gluing.  Afraid may be too itchy.  Please advise and thank you.

Oh, dear friends, I ache right along with you. What an awful thing FFA is. I still have days when I wonder 'why did this happen to me?' as if I intentionally did something to cause it. I still struggle with anger towards my body and how its attacked my hair.

Sad in Chicago - I hope to write my full story soon and post it in the discussion forum but here's some info that will help:

My bonded hair piece is custom fit to my scalp. The base of the piece is like a yarmulke that at the front, comes almost to where my natural hairline should be, then back to the crown. It comes down just a little bit -maybe an inch or two - on the sides. The human hair is hand knotted into the cap.

Underneath the cap along the edge, there are wide pieces of tape which is where my gal Megan puts the glue. She brushes on glue on my scalp where the tape pieces will go. Standing behind me, she lines up the front of the hairpiece at the front and lays it down front to back and pats it down a little. At that point, it's stuck on but good! It is glued all the way around - no taping - but there is no glue used in the big section in the middle. I had really thinned out on the top of my head as well so I just had Megan shave it down a bit - not completely but enough for the hairpiece to lay nice and snug against my scalp.  

Everyone is different when it comes to how often they have to get it taken off and re-glued. I go every five weeks - I could probably go every six. Some go every 3. It depends a lot on how oily you are. Part of my problem is I'm very dry - dry skin, dry eyes - so the glue holds super securely - which is GOOD in this case.

My piece came long - down past my shoulders. Once it's "on" I get the style I want cut into it. This time I left it a little longer since I've lost more of my hair in the back and needed to cover it better.

As far as the itch. It does not itch constantly. But it can itch along the area where it's glued down. Of course, I can't scratch it so I pat it. I'm not sure if I'm going through a flare up but my temples are itching more lately which is not glue related at all. The itch is not so terrible that I can't stand it - and many days I don't even feel it on my head, I've gotten so used to wearing it. For me, it's worth some patting on my head to not be self conscious about my balding scalp! :) As I've said on here before, no one even knows its not my real hair and I get a lot of compliments on it - way more than I ever did with my real hair.

Afraid, I can share with you how I've moved toward acceptance. I think I was grieving my hair loss the 3-4 years before I actually got diagnosed. I went through so much fear, anger, sadness, trying this product and that to hide my ever growing scalp, tears, embarrassment, etc. that by the time I was diagnosed with FFA (and having done research on it), I moved into acceptance. When I had the paper in my hand that said "FFA", I had a great big cry and then decided to look into hair pieces or wigs. There was something about knowing there was not one damn thing I could do to make my hair grow back, it was actually kind of freeing for me. I had no control of what my body was/is doing to my hair. I was tired of fighting and hiding so I decided to take control over what I could, which was getting wearable hair. I wore beautiful scarves for about two months before my first hair piece came in. I decided to "come out" about what I was going through and found it freeing.

Hope all this helps!

P.S. I got an email that CARF is holding a doctor/patient conference June 8-10 in Philadelphia, PA. I'm planning to go - is anyone else?

I would love to go to CARF in Philly. I used to live in Philly - went to high school there. 

I went to yet another hair/wig place yesterday on a whim, and finally found a person (this time for real) who wasn’t baffled and unhelpful. She says I will need what you have, CurlyK... a custom-made hairpiece that will be glued on. She already has one client like me, although that client is 80 something years old (ha!). It’s very damn expensive though - 800€ - or 850-ish dollars, and apparently I will need two of them though I can’t remember why. Wash one, wear the other? 

In any case I am definitely losing hair now in other places - more behind my ears where my glasses now rub, and more at the nape of my neck. I saw my GP yesterday - she keeps insisting that she thinks my hair is growing back. She is WRONG - what she sees is that weird dark baby-hair that comes as a side effect of minoxidil on my temples. I too had thought that was re-growth at first, neophyte that I was. She looked at the nape of my neck and said the scalp there was irritated - was I touching it all the time? Annoying questions - the answer is NO, my scalp is IRRITATED there b/c of FFA. Like Duh. But I like her- she just doesn’t know a thing about this weirdness. I am teaching her. 

Other than that - I will go see Dr Famous Man in Paris next month but part of me is thinking I am going to stop meds, or at least not go all out with meds to save my hair. The skin is thinner where I use the Clobéstal. Minoxidil is strange stuff too (see « baby hairs » mentioned above). I may just start using oils on my scalp and let it go where it will, and then do the hair pieces when the time comes. No injections, no lupus medicines, no I don’t know what else. I would like my liver to last another 40 years, and there are no guarantees that any meds will make my hair stick on my head any better. 

I still take my iron and vitamin D, and apparently need more vitamin C. That is OK with me. 

Bises. 

Curlyk. Thanks so much for sharing part of your journey towards acceptance x 

Hope everyone having a good day. 

Halfbakedwho- I hate the weird baby hairs! Dark, coarse, wiry. I have a couple of them randomly sprouting from otherwise bald spots and a few that have mixed in with the little hair that's left on my temples. I've actually been tempted to pluck them, but feel silly for yanking out hair when I'm trying so hard to hold on to what I have.

Good to hear you had some luck with looking for hairpiece options. I joined the FFA Facebook group and have seen a couple frontal hair pieces that look really good, and it gives me hope. Like yourself, my loss is around my ears and along my temple. If I do eventually need a hair piece, I suspect that I will need something similar to what you're looking for (at least for a while).

Halfbakedwho, Jess-

My loss is mostly in my temple area and around my ears. The area behind my ears goes down on either side of the back of my neck (white and smooth) making the hairline at the nape of my neck very thin. The nape of my neck has been itchy so I looked and my stomach dropped as I now see a round patch of white shiny scalp.  No more pony tails. I'm confused because I didn't think FFA was patchy hairloss?

I am trying to stay positive but as Afraid said this is all so cruel.  

OK, I read an article awhile back by Dr. Donovan that he prescribes  L-tyrosine and NAC (N-Acetyl-L-Cysteine) for his FFA patients.

I bought some but I haven’t taken any yet. I need the approval of my nephrologist (family dr. said it would be fine).

Have you heard of these supplements or taken any?

Seems that they boost your immune system, cellular health and “neurotransmitter” function.

Hi all. It has been a while since I have logged on. Reading all your stories I feel the same. Gone are the headbands, tying my hair up, upon, curling. My hair is looking dull and lifeless again and when I look at myself in the mirror, I cringe. I hate how I look.

Has anyone even dealing with stress atm. Im finding that since I've been dealing with bullies at work my hair seems to be thinning out more but I dont know what to do. Im not at the stage yet to wear a wig but it just looks so aweful

Hi Illustr8r. Is L-tyrosine a peptides (an amino acid). My husband was taking peptides a a few months ago for his neck and he claimed his hair was growing faster (he's a baldy). I thought about it but when I read the side effects I decided not to try it. If it works its worth it. 

@Yash Yes, it’s an amino acid and the other one (NAC) is too but is made to be more “bio” friendly. This is all from reading about it. (?!?) NAC is given to kidney patients after procedures involviing dyes that can further injure the kidneys-so my family dr thought it would be okay for me to take. We’ll see.

hi everyone

I am in a headband today. I am starting to move towards more acceptance. At least today, at least right now. My hair loss seems to be accelerating, though I admit I have run out of the cortisone this week and haven't been using it, which is probably not helping. I am trying to get used to seeing myself in the headband, my kids say it looks nice (they are very honest kids ; ) ! ).

I notice my hair loss more "all over" - up through the crown it's thinning. It is SO not worth it to me to go crazy over this. I really just want to move on and look for options to hide it. The annoying symptom right now is my glasses are bugging my scalp behind my ears - this started a couple of weeks ago. Does anyone have this? Are my glasses causing more hair loss? Not that I really care that much anymore - it's just going, going, and it's just ridiculous and ... like I said not worth disturbing my hard-fought equilibrium. 

I also have ordered (rather expensive) oils - apparently us curly-heads really should just use oils. Castor oil (apparently the best is Tropical Isle Jamaican Black) Red pepper oil, coconut oil, argan oil... so I will take care of what I've got left. 

I am trying to change on a deeper level (kind of a life-long project lol). Organizing my time, my priorities - my hair looking more or less okay is a priority, but obsessing over its leaving my head (to land in the shower, in my family's food, on the floor, on the pillow) is not. 

My brother-in-law, my husband's brother, died yesterday of advanced cancer at age 56. So, F.. the hair, it's important, but God has made headbands and hair pieces. 

Tomorrow I might be much less okay with all of this, so don't hold me to it  ; )

Halfbakedwho, how awful for your husband to lose his brother in law at only 56, cancer is so brutal and I am sorry.

Acceptance of the loss of hair, it doesn't make it easier when you look in the mirror, but it means no more using up valuable energy for endless fighting against something that just can't be beat.  It helps when you have supportive family and friends, & it sounds like you have a great set of kids- oh and I am sure that you rock that headband! :-) 

@HalfbakedWho My hairstylist told me many of her 45+ year old customers who wear glasses have lost their "sideburns" by their ears (and behind their ears too) from years of putting on and taking off their glasses.

Got my hair cut on Friday and I went lighter with my highlights-so is that a highlighted strand or the skin on my forehead showing through? Ugh.

Hi and thank you for the condolences. Tonight - up in the middle of the night - seems my hair is going faster these days. 

Ws it a good idea to read the side effects of the Clobestasol - aïe as we say here- thinning skin, weird purple veins, etc. I put some on behind my ears...

My sons are very helpful, they are lovely kids. My husband is a saint with OCD, but that’s another story. 

I am considering stopping my highlights to help my remaining hair get healthier. This means mouse-brown greying remaining hair. So I don’t know.

Back to sleep, not quite coherent. 

Halfbakedwho, never look at your hair in the middle of the night, never look at anything in the middle of the night- it always looks worse then it actually is.  I am glad you have the support of your lovely family through this. 

I have stopped using Clobetasol, well that is a lie- I do use it, very, very rarely if there is really intensely bad itching on my arms, but never on my scalp anymore.  For any itching on my scalp I use tea tree oil or cinnamon oil + castor oil (I also use castor oil every night along my hairline and forearms/hands) 

I got my hair cut last week too, I went from a shoulder length long layer bob to all shaggy and spikey hair and there is still length in the back, but it doesn't look like a mullet, it looks like a grown out pixie- she also cut "sideburns" and did a darker color at the roots and blonde highlights and I LOVE my new hair! The shaggy layers hide the thinning hair, unlike when it was longer there was really no way to hide the thinning at my part and if the wind blew, well forget- I was doomed to show my naked front of the ears. 

But with this hair I can make it spiky or softer and a little Got to Be hair glue on my "sideburns" holds them down all day even with putting on and off my reading glasses, illustrated8r, I bet that can very well be part of the reason why hair thins above the ears! So, I am hoping I can get away with this hairstyle for a while.

@HalfBakedWho I think you should start a FFA blog because you really have way with expressing the feelings this stupid disease brings out. I hope you feel better when you write-because I feel better when I read it. :) All the best to you,I know you are going through a sad and stressful time right now.

@Minter Welcome to Pixieland! Mine keeps getting a wee bit shorter as it seem my temples keep moving further back. I always wonder if people I know wonder why my hair is so short now. *sigh*

Wow, I love the pixie in theory, but am very scared of it as a hair-reality on *moi*. I am so used to having big old hair. Now it’s just old, and confused (big in some places, gone in others), like yours truly. 

I love the way your color sounds, Minter, and I think the idea of glueing down the sides is ingenious. I have a block when it comes to spelling Clobetasol, which is telling I suppose. It’s the same name in French just with the accent. 

I don’t actually *look* at my hair in the middle of the night but what I do isn’t much better - I touch it - I touch my scalp - Now that we were talking about the four fingers or five fingers forehead thing I have been putting my fingers on my forehead - yes- in the middle of the stupid night. No this isn’t helpful. 

Today I went to the post office to get my very first hair pieces that I ordered - they LOST THE PACKAGE. They couldn’t find it anywhere. What does this mean??? (I take everything as a sign). Maybe another balding person stole it?? Every damn person has hair envy. Endemic human illness.

As for a blog, I am flattered, but I love venting on here and getting told I should have a blog ; )

So so sorry to hear about your brother in law  halfbaked.  I agree re the blog! Great to hear about your pixie cut Minter.  

I keep reading everyone’s comments and I feel less alone with this silly condition but find it just as difficult to understand and accept perhaps even more because it really doesn’t sound as if we escape from it.  

I range from pretending I have a limited time left to live ...haha... sounds drastic but it does work (it shakes me into feeling being bald is nothing in comparison and makes me want to make the most of every second) to being in denial that I am losing my hair which buys me some time but makes me feel worse when I feel or see the bald areas and from thinking this is the best it’s going to be so try and make the most of it before I need a wig. 

What I currently find most difficult is the rate of progression of loss... rapid and extensive since September.  I re-read the BAD FFA factsheet as if magically I may have missed something important that may help! I have used clobestal now for 4 months & hydroxychloroquine for almost 3 months.  The only hope I have is hydroxychloroquine can take between 4-6 months to effect any change.  However I know it only ‘may’ help slow progression if at all. At this rate it’s unlikely by then that there will be any hair to save where I need it to be saved.  How did this happen?  I blame myself.  

Sorry...self pity strikes again! 

Unless your thoughts in your head have little bitty fire-fingers that you have purposefully caused to pinch and burn out your hair follicles from the inside out, I don't understand how you can blame yourself. If this is the case, then maybe you can blame yourself. ; )

I can think pretty crazy things, however, I don't think that I went and rubbed my head in lichen planopilarus (was in in the soil? Then maybe I did) (kidding), or that it's because I forgot to put a hat on when the volcanoes were spewing ashes in Iceland... 

Don't blame yourself please. 

Thanks...I love your take on things! I already feel more positive.  

I think the blame is for being too anxious and stressed about significant life events for a sustained period of time... people say stress is a trigger... if only I had cared less?!  Haha.  

Thank heavens for our ‘virtual’ group x

Same here, thank heavens for our "virtual" group! I'd be lost without my daily check-in, I do know I would have no idea how to handle this without you all :-) 

Afraid, I echo Halfbakedwho, please don't blame yourself- we have done nothing to cause this to happen to us, it is just the luck of the draw, yay and to repeat the above, it is lucky that we have each found this group to support each other! 

Illustrated8R, I love my "grown out" pixie look- I've had a super short pixie in the past, but I much prefer this, having one that is longer is much easier for sure. I use my hair color powder on my sides & part and then  "glue" down the sides- they are so pretty, (if I may say so myself haha)! a long curl swooping down on each side of my face- love it! Though I've learned to wait until my hair is dry to do the gluing or else they look glued down :-/  

I have not posted in a while, but I have learned so much from all of you.  I recently wrote a blog post about my journey with FFA and hair loss, I am sharing it here with you.  We are all in this together, and that helps us on our way. https://sallysbloggingspot.blogspot.com/2018/02/life-lessons-learne...

Minter, your hair cut sounds fab, I'd love to see a pic of something similar.  I have never had short hair in my life so the thought of it scares me more than a little.  I just don't think it would suit me, I'm a tall gal with swimmers shoulders (never actually did that much swimming but people have always asked if I was a swimmer).  Well maybe I can get away with my long hair for a while yet and then do headbands.  I am also very interested in bonding with contact skin, something which seems to be popular amongst men. Here in Germany I found a salon in Hamburg that have specialised in it.

http://www.hairsystems-heydecke.de/haarsysteme.html

Has anybody had experience with this type of hair piece?  I would be interested to hear your views on such hair systems.

Keep well and btw @Halfbakedwho, I really have thought about you a lot the last days and my thoughts are with you and your family.  I was also wondering where abouts in France you live, do you happen to live in the north east.  I was thinking how exciting it would be to get a European continent meeting going. Even if we only met up every few years.  Well it's just a pro active thought but who knows?

Sally, your blog post is just beautiful!  Thank you so much for sharing that with us!  What a wonderful read to help us as we all adjust to our new normal. And your new wig is incredible, as are your fantastic boots!  

Hi Rachel and everyone,

I live in Nantes - not exactly on the border : (. I will be in Reims tomorrow for the ceremony for my BIL. A bit closer. If you come to Paris or get further west, let me know! We will be heading to Prague and Budapest next summer... it would be nice to see each other, agreed : ). Thank you for the blogging, Sally...

Hello all!  Went to a new derm today (didn't like my old one).  I am already on Dutasteride and Minoxidil, but she is going to add CLOBETASOL PROP 0.05% SOLN 25ML  .  She said to just rub it in over my Minoxidil.  Have any of you used this?  Also, I have lost my eyebrows over the past year.  She told me to start putting the Minoxidil on my eyebrows (tiny dab).  Has anyone done this?  If that works, I sure wish my old derm would have suggested that before I lost all my brows!