Here's a pic of me on vacation at Carlsbad Caverns, New Mexico, wearing a headband across the front with my hair down.

My forehead is very much lighter where the hair loss is, also at the temples and in front of my ears. The headbands do cover my temples but not the area right in front of my ears, but I wear glasses so I think it hides it fairly well. At least no one has asked me about it anyway. I do have a thin strip of fine hairs at the very front and sides of my former hairline and then it goes bare after that - Like a line of hair that still grows but bare behind that. I started shaving the very front on my forehead so at least I don't have this weird strip of hair. My eyebrows have thinned but are mostly still intact. I've been on methotrexate to help with inflammation and my scalp is a little ichy sometimes but not sore.

KarenGinny -- I think the band is very effective.  Happy it works for you.  I have shorter hair so between my extreme loss and nothing to stick out from under the headband it looks bad.

Lo -- I am not on any medication,  I tried Rogaine and propecia to no avail.  My derm mentioned the anti malaria pill but I decided not to do that to myself, especially since she said there has never really been a cure  I am a breast cancer survivor (20 years now, got it when I was very young, 43) and am not prone to putting wierd things in my body.  

The loss, although I have not really mesaured it, is a good 2-2.5 inches back.  It goes back from my ears as well.  I have very little if any eyebrows left.  I have been able to camoflauge with makeup and brow stuff as well wear my hairpieces, one or the other every day.  Sometimes when walking or excercising I just wear a baseball hat.  

I really do not think anyone other than the few I have told knows I have this condition which is the way I like it, as my hairpieces are pretty good.  I am not ready to really share and hate that I am dependent and sometimes feel like I look funny even with the pieces.  But I do my best to continue to look like myself and  so far it seems to be working.  The difference between having the hairpiece on or not is astonishing to me.  I particularly cannot get over my forehead being so white!  I always wore bangs too, so I guess that didn't help!  

anyway, until I am an old, old lady I plan on trying to look the way I do today.  Not sure how much longer I can carry it off, as sometimes the clips come loose on the pieces as the hair beneath is so thin.  I am hanging in there tho.  

I am certain menopause had a lot to do with this too.  Also I was very stressed over something when it started, but the derm says that does not really add into the mix.  Oh well, whatever, it is what it is.  Good news:  no face fuzz, moustache, pulling hairs from my chin, shaving legs, hairy arms and smooth skin.  

Karen Ginny - OMG!  You are adorable!  You wouldn't even know you had hair loss!  The remaining hair is SO healthy looking - and the headband absolutely suits you SO well.  I have short hair (like Sad in Chicago), so headbands can be a bit challenging... but I will deal.

Sad in Chicago - I'm curious about a couple of things if you are willing to share! 

1. Were you initially able to pull your bangs from further back on your head?  I joke and call it the "Donald Trump" way... because you are "borrowing" hair from further back. But I, too, have always wore bangs... and as my hairline recedes, I am just having my stylist cut it so that they are using more of the hair that I do have and bringing it forward for "bangs".  It isn't ideal - but it seems to work... did you ever do this? 
2. Also - did you ever look into using tape-in hair pieces as opposed to the clip-in?
3. Oh - and lastly - how long have you had FFA - or how long has it taken you to lose the amount you've lost?  Hope to hear back!

i'm sorry i put this here too

Hi everyone!

I'm CCCA sufferer, a variant form of FFA with LPP and lymphocytic inflammation all over the scalp.I come here cause there's something that could REALLY help us!

At the last 'Norht American Hair society scientific meeting' in may 2015, 4 well known researchers presented this study :

"Altered vitaminA metabolism/signaling in CCCA patients"

Liye Suo, Wilma F. Bergfeld, Natasha Mesinkovska, Helen B. Everts. Poster #665

They made the direct link between the two.

Two others studies that link CCCA/ PCA with alteration of vitaminA metabolism/signaling :

https://etd.ohiolink.edu/ap/10?0::NO...D_SUBID:103145

http://www.nature.com/jid/journal/v1...d2012393a.html

Our metabolism and RA receptors don't synthetise normally the VitaminA, and that lead of high levels of all trans retinoic acid in our tissues.

In different studies, they show how all trans retinoic acid inhibit the Wnt pathway ( the most important pathway for hair ! )

 "LPP is postulated to be an immune-mediated disorder characterized by an autoreactive, lymphocytic inflammatory process against an unknown self-antigen. In LPP, follicular antigens may be the target of a cell-mediated cytotoxic immune reaction

In other studies, they show how all trans retinoic acids enhance the citotoxicity!!!

Everything makes sense, in my case I take full high dose treatment of Accutane, that changed my vitaminA metabolism and my RA receptors, but those changes can come from multiple factors.

In the studies, they talk about pharmaceutical Aldh1a1 inhibitor.Inhibit this Aldh1a1 lower the all trans retinoic acid levels in all the tissues!!

Girls we need to do something!! This inhbitor is our best chances to stop hair loss!!! We need to contact every good dermatologist to help us to make this chemical compound for us, or to make clinical trials, or even make our own command group in private lab if no one want to help us!!

But these researchers are some of the best in the world!! Our vitaminA metabolism/signaling is altered, and we need to take this ihnibitor, cause the more we wait, the more dead follicles we have.

I come here to search help, on what we could, who to contact to help us to buy this ihnibitor, I'm in France, and it's rare disease, no one knows anything!

in the first study I post, the researcher say he developpment a better Aldh1A1 inhibitor. Someone need to go see him to ask help

in this other study, they found 30 selective Aldh1A1 inhibitors!

http://www.sciencedirect.com/science/article/pii/S0009279714003263

We need help:( !! This is the best solution we could ever have!!

Those dermato/researchers are all in usa, but I don't speak well English in oral so I can't phone to have a normal discussion, infos etc..

Let's do something , I beg you

and a last thing, RA ihnibit sebaceous gland function and his stemcells, and in another study, they explain how sebaceous glands dysfunction is linked to lichen planopilaris!

lacazette - do you find that the Accutane has been effective at stopping/slowing your hair loss?

Hey Lo!

No it's the contrary! My full highdose of accutane that I take younger was the cause of my altered vitaminA metabolism/signaling ans so my CCCA/LPP!

And those changes via my RA receptors, etc.. lead to high levels of all trans retinoid acid in continous in my scalp, those atRA hihg levels kill the hair via reducing the wnt pathway( the more important for hair), ihnibt the good fonctionnement of sebaceous gland ( that is directly linked to LPP)

those researchers explain how our alterded vitaminA metabolism is linked to CCCA( and so LPP,FFA,PCA)

In my case it's accutane high dose that changed my vitaminA metabolism, but thoses changes can come from multiple factors ( genetic, environment, dietary)

so I really think those researchers found the main cause of our problem!! And the solution is to inhibit ALDH1A1 as they explain. If we inhibit this, we'll have an upregulated Wnt pathway, better sebaceous gland function, and less LPP inflammation!

there is many ALDH1A1 selective inhibitors already known, so we need help to take one of this at good dosage, it's our BEST CHANCE TO SLOW,STOP HAIR LOSS

those researchers are specialists in LPP/CCCA, we have to believe them, and make things more fast, we 're not a lot with this disease so we have to help eachother to test this inhibitor as soon as possible, the more we wait, the more follicles are definitly dead:/

Lo - thanks for the compliment! that was one of my better hair days. I've been letting it grow longer hopefully to hide the hair loss. Most of the time this summer I've been pulling it back into a ponytail when it's too hot outside. I do have a lot of thinning on top where my part is and the hair on my right side is thinner than the left. Some days I don't use the headbands and just try to go with my bangs pulled forward and straightened and lots of hairspray. I'm going to my niece's wedding in a month and need to go to my hairstylist for a trim and to help me figure out how to wear it so it looks okay. 

Lacazette - that research looks promising. I do wish doctors would take it more seriously as this condition seems to be becoming more common.

No Lo, the exact molecules are known to inhibit ALDH1A1, but these comes from researchers recent studies, so a pharma lab/ professor could easily make the chemical compounds for us to take but we need to find where and who!!

I just see the drug 'disulfram' for chronic alcolohism, it inhibit the ALDH1A1 BUT it inhibit also other ALDH families, so we need the selective inhibitor of ALDH1A1

"ALDH1A1 is responsible for the synthesis of retinoic acid in the cranial tissues"

That lead to high levels of atRA in our tissues  kill our hair, our sebaceous gland, silenced our wnt pathway and is the responsible of our " cells cytoxicity auto immune reaction "= LPP

Our altered vitaminA metabolism.Signaling is the cause of our problems!! that's come from the best researchers, we have to believe their studies

In my case it's accutane that altered my vitA metabolism, but it can come from multiple factors as I said ( genetic, chemicals, etc)

So inhibit the ALDH1A1 really sound like the best solution for our nightmare and it could work well for years, cause it will regulate what is going wrong in our VitaminA metabolism.

But we need to find a professor, pharma, private lab,etc.. one that want to help us, and just make this chemical compound for our disease.

that's why I come for help, cause the more we are, the more we will find a solution

there's already the chemical formulations of selective ALDH1A1 inhbitors, but how can we make this become a product if no professor/hospital help us?

Please explain.  Does this stop the FFA or would or could it reverse it?

 @Sad   Not reverse it cause our alopecia is cicatricial so there's no more follicle when it's bald. but it could the best thing to really slow or even stop the processus. and maybe save the follicles that are begin to be attack

there's already more than 30 known selective ALDH1A1 inhbitors found in studies. Some with their chimical formulations online. We just need a lab that would make our special compound :(

or maybe a professor/hospital who is okay to make a trial for our disease

The relation between altered vitaminA metabolism/signaling and CA, CCCA, FFA is confirmed now, we just need help from a professor/pharma/universtiy,private lab,etc  who accept to make this inhibitor for us and our disease!

Regarding those studies results, inhibit the ALDH1A1 could be our BEST CHANCE to stop or really slow this nightmare!

it will lower the atRA levels in our cranial tissues, it could do all the good thing for our hair: upregulate the wnt pathway, stop the sebaceous gland dysfunction, stop the LPP, so infine stop the process of hairloss

well we have to try this thing before it's too late. But we have to move things on our own cause we are a too small number with some cicatricial alopecia and we don't represent money for the big pharma. But we just need one lab that would make our little pills of that inhibitor, it is possible!

I can't live normally with knowing in my mind that something could slow the processus for years or even stop, and could be reality to help me, and each day that passes, it's some follicles that will never come back, it's so frustrating :/

lacazette you should send your information to CARF to add to their research database.  I don't see anything new there since 2012!  (http://www.carfintl.org/research-articles.php)

This page has a list of Drs who are doing research, or at least care about the subject.  Maybe one could help you (us)?  http://www.carfintl.org/trials-studies.php

Also, what is the hair like near your loss? I have broken, dry, brittle hair all long my hairline that doesn't seem to grow, (part of this could be traction wore my hair pulled back for pretty much all of 2014) does your hair look or feel different  in that area? It's like a 1-2 cm band of hair like this, and then the rest is soft and grows normally...it's like i can see an outline of what's going to fall out/thin

Sanandunsure:  I actually have soft vellus hairs all over my jawline and "mustache" area.  It is so blonde, you cannot see it... but it is there... and I have no bumps or itchiness associated with it.  I also grow hair on my knees... which is so odd... as it is nowhere else on my legs.  I only have to shave it once every 2-3 weeks... but still???  I do not have small white hairs at my hairline... and the hair there is thinner, for sure... where I believe the FFA is "active".  I am losing at temples and "southward" (around ears) primarily - and have been for 5 years.  The forehead/front just started to recede w/in this past year... and it is back about 1/2 inch - maybe more.  I hope this answers some of your questions.  OH, and I have no eyebrows... I had them tattooed in January and they are awesome... and I have full eye-lashes... in large part thanks to Latisse. 

Thanks Lorio, I will contact them tomorrow. Two of the doctors in the list are ones of the last presentation  at the 2015 hair congress ( bergfeld and Olsen) that linked vitaminA and CCCA

So they know that inhibiting ALDH1A1 could help to regulate what is going wrong, as their collegue demonstrated in his study. So let's contact them  and the association, we are suffering and there's something that could help, we have to make pressure on them ( even if they are probably already planning some clinical tests I guess, but maybe not!) We need their help to not have to make it by the black market,etc which is complicated.

sorry I make weird sentences, but it's not my native langage;)

@Sad, Yes unfortunately , what you are describing sounds like the process of miniaturisation. The hair grow thinner and thinner and then don't grow anymore

And you can have FFA, CCCA, LLP, in combination of AGA so be careful with dermatos that give diagnostic with a 5 seconds's look on your head.

Classical Anne - do you mind my asking how much you have lost?  Are you still able to conceal with your own hair - or have you moved on to hair pieces and/or wigs?  And lastly, what is/was your treatment plan?  Many thanks. 

I have not had a biopsy confirming FFA other than the very obvious appearance of it along with all symptons.  During the early phases I was very itchy, and occasionally I will notice tiny red bumps where there was loss, but now I am smooth as can be with this shiny white forehead moving back where the loss is from the front of my hairline as well as the sides of my head and around my ears.  It seems to be slowing down, but frankly since I am wearing my hairpieces I do not notice the loss as much as I hate looking at it, and cover it almost immediately upon getting dressed.  When I wash and blow dry my hair it can look surprisingly ok for a few minutes, but it is deeply thinning on top and the front is frizzy often when humid or hot out.  (how I long to be able to wear a pony tail or pull my hair up......!!!!)

I am finding this scientific discussion confusing but will mention to my dermatologist next time I see her within coming months.  

Thanks for sharing all your research.

Based on the research done below I wonder why they jump to the conclusion that it is only estrogen that suppresses Aldh1a1?  Since they removed the ovaries of mice in these experiments that would have also ended production of progesterone.

"The researchers surgically removed the ovaries of mice to test whether estrogen could be related to visceral fat production in females. As soon as the animals became menopausal and weren’t producing estrogen, they began to produce retinoic acid, which led to visceral fat formation."

http://researchnews.osu.edu/archive/visceralfat.htm

I took a huge step today.  I saw a wig maker who is making me just a frontal piece that will take the place of my bangs.  I have tried head bands, wigs, toppers, and even made two toppers out of two different wigs myself.  Now, I am having a professional make me a piece that will just be attached by tape and clips in the frontal area where my hair is gone.  

I have decided to be practical and get the best coverage for my own hair loss that I can and go on with my life.  I will not be treating this condition with medicines because I have had terrible allergic reactions to everything I have tried.  I support all of the efforts that others are doing in finding out what is causing this terrible disease and applaud all of you smart women.  I think we need to use our voices to advance research in this area.  I am grateful for this forum and for each of you.

@Sadandunsure I had really low ferritin too. Mine was 6.  I started taking iron supplements a year ago and I'm only at 64 now.  I've read that low ferritin can cause hair loss and that it won't regrow until it reaches 70. I was hopeful that was my problem, but I don't really think so.

@ Linda in Cincy, I thin there is definitely a hormonal connection.  I have been on thyroid medication for most of my life, and was on birth control pills for about 30 years.  When I went off them in January 2015, my hair loss really accelerated.  My hair loss started while still on bc pills, but I lost most of it after January.

I'm taking the Plaqenil, hoping I can at least stop it from getting worse.

I wonder if anyone has also noticed overall skin changes?  My skin texture is completely different, thin and wrinkly and weird. 

Interesting Linda, it could confirms that overactivity of Aldh1A1 could be a major factor of our hairloss. Some because of hormonal, some because of genetics, some because of chemical (accutane), whatever the cause, but our vitaminA metabolism/signaling is altered, and inhibit this Aldh1A1 could really help to regulate, and slow the hairloss, as the researcher explained.

there's already chemical formulations of selective Aldh1A1 inhibitors, some who have aggressive hairloss like me would need to test it asap before it's too late, but how ? that is the problem,  I'm afraid that no professional will help us :/

Marion, the piece is not going to be human hair.  I was conflicted about making this choice, but in the end, went with the professional's advice.  She will style it to look like my hair.  It cost me $1150.  Unfortunately, I think I have already spent that much on hair pieces and wigs that were really not right for me and did not work.  I would have save myself a lot of money and grief if I had gone to a professional who works with medical wigs instead of going to wig shops.  I wasted my money in wig shops and never got anything that really worked even though one topper that is labeled as human hair appears not to be.  The professional at the medical wig shop tested it and said it is probably human hair mixed with synthetic.  It cost $500.  It is the wrong color for me and really can't be styled or dyed to work.  Buyer beware.  Work with medical wig people.  I will never go to a wig shop again.  

No one is interested to find ways to have access by hospitals/professors,etc, to an ALDH1A1 inhibitor? It could be the answer, save our hair and solve the LPP problem!

Would mean no more medications that just try to stabilize the disease. Here we would fight directly at the root of the problem!

Dr Wilma bergfeld, and Dr Olsen are two of the researchers that linked altered vitaminA metabolism  in CCCA patients.

CCCA and FFA is the same disease with same causes and consequences but with a different pattern hairloss

 Aldh1A1 inhibitor could save our resting hair girls!  it would be worth a try

Wow. This is really a fascinating thought about Vitamin A. Just wanted to chime in about a couple of possible connections that I have thought about since this discussion started. First, I used to take a multivitamin everyday that had a lot of vitamin A in it (along with a lot of other vitamins, of course), but I stopped taking it about a year ago because I noticed that whenever I took it regularly, I noticed more hair thinning around my front hairline. Also, when all of my FFA started, I was using Retin A on my face regularly. During peri-menopause, I started getting cystic acne on my face (never had acne before this) and my doctor prescribed Retin A. That is when my hair started falling out on my temples really bad. Of course, I was in peri-menopause (my hormones were fluctuating like crazy!) and had VERY low ferritin levels as well. I also had my first flu vaccine, after contracting a horrible flu the year before, which I also feel added to the hair loss/developing this condition, because a bunch of hair fell out a couple of weeks after I had it. My immunologist and endocrinologist all say this revving up the immune system could exacerbate the situation.  Anyway, just wanted to share my experiences with all of this. Now I have to go look up those foods high in vitamin A...

Sadandunsure, I agree with you for being careful about have our hopes high up, but in my case and others in France, we have CCCA and losing ALL our hair. And we all took accutane treatment that changed our vitaminA metabolism for life

Those researchers explained in details how this is affecting our hair, so please understand that we are hopeful to stabilize the processus. If we take nothing to regulate what is going wrong, in a few years we will have no more hair (healthy lifetstyle or not).

I agree it won't be the 100% perfect solution maybe, but it can slow the process and it's what we need. and the time is playing against us, who all our follicles are affected

@MJ, please can you ask her if they are developping the inhibitor they found in clinical trial or if they just continue the research? Do you see her before 2016?  many thanks in advance:)

would someone give me the info on vitamin a as I have not been able to find the main article or any info

I probably should have added that I didn't even notice the loss of hair on my arms until something I read called my attention to it.  Sure enough, for the last couple of years I have had ONE persistent hair on one arm -- and it keeps growing in, long and black, until I clip it off again.  I never had much visible hair on my face, so no loss there.  But in addition to nearly invisible eyebrows [which I have become quite an artist with] I have lost all but 6 lower eyelashes, and that is particularly sad to me.  And unlike many grateful ladies here, my stupid stubborn hair still grows on my legs and underarms.  Amazing how differently we each react.