Thuya essential oil also looks promising, though I read several warnings on different sites that it should be used with professional guidance only :-/ yikes! So I think I'll start with castor oil and take it from there for now :-)  I would really like to learn more about essential oils, they can do so much & I feel like I am just skimming the surface when it comes to the use of oils. 

HBW, it doesn't sound corny at all to be a role model for yourself, it is a good outlook for the "art of living" like you said- and it is something that should be embraced or else this stupid FFA will very easily take over our lives- 

Happy New Year everyone!

Hi Ladies, thought I would share what I just found on the Internet.  Three bird nest are selling some pretty good head wear in the way of headbands, headpieces and velvet turbans.  Some items are maybe a little flambouyant  but what the heck.  They are US based but from what I understand they deliver internationaly.  Have fun looking.  

Rachel Germany I just checked out Three Bird Nest they do have good looking headbands, though yes, maybe a bit flamboyant for me and my weekly trip to the Walmart- but who knows- by this time next year I will have no problem rocking a velvet turban while grocery shopping! 

Lol velvet turban! I will check it out. Am sensitive these days b/c almost 52 years old and my neck is falling down too. So I am going to wear a turban, and a very high turtleneck, and just let my face peek out. Like a turtle, hence turtleneck. Possibly I will also add a cape just to add to the mysterious effect. I will also need a sword. OK it is Friday, forgive me. 

Haha happy Friday Halfbakedwho ;-D !

I just turned 53 and now have a neck that any self respecting turkey would be well proud of, blehhhhhhhhhhh. 

Now a velvet turban, turtleneck, cape and of course a sword might well be the way to go forward- wouldn't give a hoot about my hair if I was facing the world in that getup every day! 

How come it seems when I have to go somewhere my hair turns out crappy but if I’m at home it looks fine. I swear 9/10 times this is the case. Did I use too much conditioner, not enough, too little product or too much?!?  Ugh. I hate using hair spray but I had spray my wee hairstyle within a inch of its life today and I’m feeling very self conscious about-everything. $!?#%!!

Or on weekends it looks amazing, but to go to work I have an electrocuted poodle on my head. I just got it cut and it's a drop too short which makes it stand up higher, and I can't attach it with a barrette. I hear you. 

Turbans are no joke.  I've recently discovered these and love them for everyday use, cover more than a headband and are much more comfortable than wigs, which I reserve for some work and formal occasions.  I buy mine from AliExpress, plain ones less than one Euro each so I got one in each colour to match all my clothes.  A bit more expensive but still very affordable are the velvet, metallic, sequinned, animal print, with applique flowers or pearls, sparkling brooches--something for every taste and occasion.  

ah, sorry I didn't mean to offend. I may get to turbans myself... but for now can hide under what's left of my own hair. I tend to joke about EVERYthing, like a nervous tic. My apologies. 

Hi All

I have just had a look at the head gear on the two sites you mentioned - definitely a great variety to choose from. Thank you for sharing these sites. 

xOx

My hair was flat and “gappy” today. My bangs kept separating and showcasing my high temple areas. Not sure what I did wrong in the washing/drying/styling equation today but not a good hair day. :(

I hear you ladies!  Or it looks the absolute best it has ever looked the day you are getting it cut :-/

I have discovered that dry shampoo is my new best friend for my hair-  as no matter which shampoo/conditioner or combination of that I use, nowadays my hair is always thin and flat after I wash & dry it- after I dry my hair I give it a few sprays of dry shampoo and it gets a good bit of volume without it looking dry or like a rats nest- which it looks like at the moment as it is a hair washing day haha ;-) I'm also on the hunt for a good hairspray as I am now using hairspray pretty much every day to keep my hair where it supposed to be as opposed to B4FFA (before FFA) I used to use it only on the rare occasion-   so between the hairspray and dry shampoo I have a lot of "artificial volume" in my hair, but whatever - its working for now ;-)

Oh I forgot to say I got my Lucinda Ellery bangs & side pieces removed the other day- it felt really weird at first not having them there (even though I had only had the pieces for a few weeks) but I am soooooooo happy they are gone.  I would absolutely recommend LE for anyone who is interested in going that route, they are really great and my hair looked fabulous (yes I said my hair looked fabulous haha)! and I got tons of compliments- I just can't have something permanent on my head like that apparently, sigh :-( and if/when I get "hair" again, it must be something that I can remove myself when I want to.  I am now waiting for my hair/scalp to have a "little rest" after having so much done to it recently, with having the pieces added and then removed and then I'll go in and have it colored and get it trimmed.  

@Minter I’m glad dry shampoo works for you! My hairstylist is a big advocate for it’s magical qualities. LOL I have a can of it but it makes my head itch so I only have used it a few times. Oh well. Today, working at home in front of computer all day-hair looks fabulous! Well, it’s new version of fab-let’s not get crazy. ;)

image.jpegimage.jpegHi Everyone

Alopecia does not define who you are. Yes it is a hard when you are first diagnosed, and it is a journey that is individual to each person. I spent 10 years with more and more hair falling out each year. The medical experts advised me it was FFA and that it would be a miracle it it ever grew back. We tried steroid cream and some medication, but nothing improved. I managed to keep my head up and tried to not let it affect my confidence, despite people steering at me. Then by early last year it had progressed to where I noticed my confidence slipping so I decided to take full control. Went to my hairdresser and we shaved it all off - we had a laugh that day. I then wore a temporary wig for 3 months while Freedom Hair Wigs made me a real hair wig and I love it. I miss my natural waves but it is worth it and I can always get some put in. I honestly wish I'd done this years ago. My partner loves me for who I am so most of the time at home I don't even bother to wear it. It is quite liberating to have a bare head. I shave my head in the shower each morning. The wig has a silicon cap and it stays on even in a storm. You can swim and run in it. If something like this is an option for you I really do recommend it. Have attached a before and after photo.
Helen Mason (New Zealand)

You look great Helen M! To be honest, what you have done is what I consider doing when/if the time comes, I tried a semi permanent hair piece and it wasn't for me.  To read your story makes me more convinced that if I need to do it, it will be the right thing.  Thank you for sharing :-) 

illustrat8r, luckily (considering how many other products make me itch)!!!!! dry shampoo doesn't bother me- though I did just get a different brand as I had a coupon ;-) so will see how it works out.  I did notice there is a huge selection of dry shampoo in the hair care aisle now, so we aren't the only ones who use it!

Talcum or baby powder or cornstarch are a good substitute and may not irritate your skin as much, so might be something to try - and they are the original "dry shampoos" though it might be a bit of trial and error as it wouldn't be as easy to use as a spray.  

Oh and of course your hair looked murphy's law fab-awesome, you were home all day! ;-D

I second the thank you to you, Helen. I have been pretty preoccupied by my hairline these days. My GP just gave me something to « calm me down » which is normally not my thing but I accepted it. Every day is different - some days I forget about it, some days I’m not okay. Right now, I need to have dinner. (!!)

Hi Helen

Thank you for sharing your story. It is good to hear about different options, and how people get on with them. I have been thinking about ‘the Lucinda Ellery’ option, but don’t like the idea of the cost and maintenance. 

Can I ask you if you shave your entire head or just the front section and have a partial hair piece? 

It is lovely to see how positive you are with this crappy condition.

xOx

Hi,

Can anyone recommend a good place for wigs in Sydney, Australia?

Hi Helen,thankyou for sharing your story with ffa & the photos. The freedom wig looks great on you, and very natural. I have also considered this option if the time comes &it moves back to the point where i find it too hard to 'walk out the door'. My only concern is if my scalp is still tender & itchy how this would work with the freedom suction cap. I have scalp tenderness not only across front but also over top (espec on right side) & a particular spot not on crown but almost as far back more to right side.Have you experienced any scalp discomfort with yor FFA or are your symptons asymptomatic? Iwas wondering do you wash your hair in shower while wearing it or otherwise?

Hi, my name is Yash and I have just been diagnosed with FFA. I’m devostated that it is irreversible. My hair started to receed 6 yrs ago and I never noticed it until last year when my bangs were totally gone and my forehead starting getting more prominent. 

Has anyone else diagnosed at an early age as I believe it generally occurs when you are Post menopausal but I haven’t gone through menopause yet. I was also told the hormones I took with IVF May have made it worse. 

Is anyone taking plaquenil tablets and has there been any side effects? 

Hi Yash,

I’m sorry you’re going through this. It is awful as women. I am 34 and was diagnosed last year. Some days/weeks are easier and some are really hard. I am on plaqueniI. I was taking it last spring but was getting bad cramping. This time around I don’t have any side effects. I had an eye exam prior to taking the medication. My doctor and the eye doctor both didn’t seem too concerned about actual retina damage. My doctor had suggested injections as well but I have chosen to use a liquid compound of minoxidil and finasteride on my scalp. I have only heard from one person about positive Outcome of the injections. Unfortunately there is no actual cure. No doctors really know what to do they are all kind of grasping at straws’s. It really is just in evitable we can maybe slow it down with what we’re doing. It is super hard and I understand how you feel. 

Hi Yash

i was diagnosed in September (aged 50) I’m not post menopause.  I am an older mother and also had ivf in my early forties....I have often wondered whether this has contributed to FFA/LPP & Lichen Planus.  I have also experience skin allergies for my whole life. For example, prickly heat, reactions to some antibiotics, react badly to insect bites etc.    Like many others I have also experienced sustained stressful periods of time in my life through significant bereavements etc etc.  I constantly try to make sense of this whole devastating condition.  My scalp is sore and itchy, my whole body can feel itchy.  At first I thought I wouldn’t take any medication (having never taken any regular medication other than for ivf!) then I thought I had to give something a try.  I apply dermovate 1x day on my scalp & I’m 5 weeks into hydroxychloroquine.  No side effects until a few days ago when I developed itchy rash on my chin & yesterday lumpy rash on my arms and cheeks (perhaps the Lichen Planus or a reaction to the medication who knows?).   From what I’ve read on internet 30 % chance of positive outcome with this medication (45% with finisteride). However, when I asked dermatologist she said there were no figures or statistics re success rates?? 

I’m exploring options re wigs as want to be prepared and there is not a chance that I would present without hair.  The uncertainty and permanence of this condition are hard to accept and I’m not there yet.  This forum is amazing & I thank everyone for sharing & understanding. 

Good luck Yash 

Thanks for your post Helen, inspiring & you look amazing. 

Hi Airam - yes I shave my entire head. I am quite quick at it now and so far haven't cut myself!! I use a good quality 'mans' multi blade shaver - just one I bought at the supermarket. It was a big decision to shave it all off but I don't regret it for one moment. The only challenges so far are when you have an itch on your scalp you can't scratch it so I just press down on the spot with a finger and that works, and on hot humid days it can feel a bit like you have a wee pool of sweat under the cap, but it isn't that bad and it still stays firmly attached. Cheers Helen

Reading a post from @Minter about the Lucinda Ellery system, curious about why you feel it didn't work for you? I met with them last week, it looked like an effective system although I don't think for me because of the relatively high maintenance. Would be interested in your thoughts?

Hi Jules - fortunately I don't have any scalp tenderness. I did have a wee bit of light redness as my hairline tracked backwards. Sometimes I get the odd shaving rash but that tends to be when I need to replace the blades. Nothing has so far prevented me from wearing the wig. I wash and condition it in the basin, comb it through and leave to dry on a towel overnight. One morning I put it on and washed it in the shower but it was more of a hassle so didn't bother again - you still need to wash and shave your scalp. You don't sleep with it on. I have a selection of knitted beanies to wear in bed during winter - my partner couldn't care less what I look like as long as I am happy and healthy. Cheers Helen

I have had the interlace system now for a year. At first I hated it and found washing etc difficult. But I have persevered and now feel quite at home with it. People tell me I look good but that could be because I'm now semi retired and taking the time to exercise more.

i have given up totally with doctors and medication and can honestly say I feel better for it. My skin still itches like mad at times but I keep it well moisturised. I would definitely say if you can afford it the system is worth investing in. I also feel so much better when I've been to LE as I realise other people have far worse to deal with than me.

Thanks for your posts LVL and Afraid. Greatly appreciate it and I don't  feel so alone. My mum lost her hair in her mid 30's but I never thought it would happen to me. Hers was from lupus. 

I hate looking at myself in the mirror but at this stage I still have hair that I can cover but its not the same. My hair looks dead and I can't style it. I don't even go to the hairdresser anymore. Does anyone still get their hair dyed. Is it worth dying it lighter so its less obvious or does it make the condition worse?

If there is no cure, is it worth taking the drugs and steroids as the dermotogists claim. My mum just says live with it and do not take further risks with your body. I'm scared as I do not want to damage my eyes (LVL - my dermo told me to get them tested too), liver and kidneys. 

For those who have been on treatment for a while, is it worth it? Has it made a difference? Has anyone tried alternative treatments? I had the injections done and my head is still hurting two days on

Liz L,  I loved the way my LE system looked- I walked out of there feeling like a million bucks!  My system was basically like a small hair band for my sides and bangs as the top of my head wasn't that bad so I didn't need the full system, it is also less expensive then having the whole system done.  The sides had to be taped down and the the back of the sides and bangs were attached, the front of the sides were like flaps that had to be taped and the few stray hairs I had were shaved for where the tape went.  I was very pleased with how natural it looked, it did not look "wig-like" at all.

I had long bangs, past my nose when I went in and they of course were trimmed to match the system so when people saw me after I just said I got my hair/bangs cut.  The color matched perfectly- in fact the staff went above and beyond to make sure I looked and felt 100% when I was done!  I would absolutely recommend it if that was the way you wanted to go- you have to go in every 6-8 weeks for it to be adjusted and you do have to keep in mind that you need to give yourself more time to care for your own hair and the system.  But the problem was for me, I couldn't take having something on my head All The Time that I could not remove- I don't know, maybe I am claustrophobic or something, but it got to the point that even though I looked great, well my hair looked great haha- I could not take having the system on my head anymore and was ready to just cut it off myself if I had to, that is when I knew it had to come off.  I am adjusting back to my "own hair" again and sometimes miss my full head of hair.  

Yash My mother has lost most of her hair also from Lupus, I think it is Lupus of the skin- she was around 70 though when it started with her and that was about 5 years ago. I am fairly certain she also has FFA, as she has all the FFA symptoms too.  There aren't too many of us that FFA/hairloss has occurred from mother to daughter, yay for us being so unique, sigh. ;-/

I tried medication when I was first diagnosed the summer before last, but pretty much gave up on doing anything medication wise, I did try the steroid injections for about 4-5 months every month, but gave up on those as yes, they hurt, a lot! and I was told by the doctor that they could end up making "dents' in my scalp, yeah, no thank you!

I am able to take care of any itching skin irritation with essential oils/tea tree oil and my new discovery thanks to illustrated8r of castor oil and try and eat a healthy diet and just take care of myself.  I am of the thought that this will take its course either slowly or fast until it burns itself out no matter what I do so why add all these heavy duty prescription drugs to my body.  That is just me though, other people have gone the medication route and are pleased with the results. I am also over 50 and you are a young lady, so you need to do what feels right for you.  

I do color my hair- it is a light strawberry blonde naturally and I get the roots colored darker, almost a dark brown as it keeps the hair looking as "translucent" like when it is colored lighter at the roots- then I use a bit of dark powder to touch up on the sides in front of my ears and lightly on my part and then I use "boost n blend" root powder on the part line on the top of my head and so far its working- also dry shampoo and velcro and or hot rollers are great for volume, sometimes it feels like all smoke and mirrors but its working for now and if/when it gets worse I'll take it from there.  

We are all here for you to come and vent or ask questions or whatever whenever you want to Yash, this group is a life saver for me!

Yash, it is a devasting diagnosis. Some days I look at my hairline and just can't believe it is happening. I find myself admiring other people's hairlines now which would have seemed odd to me years ago. I was diagnosed when I was 38 and am now 42. I started noticing thinning when I was around 36 but it took awhile to get the right diagnosis. I see a specialist at Duke University every six months. I take Finasteride and Plaquenil. I have not experienced any side effects. I see a retina specialist once a year. He doesn't seem too concerned about my taking Plaquenil. I have blood work done every few months. My hair loss has stopped. It hasn't grown back but I haven't lost any more hair. I can still cover it up with bangs. I try to stay positive most days though I have my moments. I think we all do.  

Hello 

I am involved with a study at Mass General Hospital and this week undergoing patch testing to see if I react to the many chemicals in sunscreens and other products used regularly.  

I have been wearing sunscreen on my face for over 20 years and wonder as I assume they are at Mass General Hospital, whether these chemicals have something to do with my FFA diagnosis.

I have since switched to mineral sunscreen but cannot tell if FFA has stopped.  They told me they are doing this testing at Brigham and Women's Hospital also.  

I'm driving myself crazy trying to pinpoint when this all started for me.  I look at old photos, it's been over 8 years now.  So depressing!!!

Everyone might be interested in a stem cell/skin/follicle study  https://www.sciencefriday.com/segments/a-hair-closer-to-lab-grown-m...

Yash, do you know about the CARF organization.  Cicatricial Alopecia Research Foundation   The "for patients" tab is helpful.http://www.carfintl.org/

It's a tough diagnosis, but hang in there!

Hi Ammie

so good to hear some positive news.  Can I ask how much plaquenil you take and do you take oral or use topical finasteride?   I asked my dermatologist about finasteride and she refused because she said it only works if alongside female pattern hair loss.  I can see hair  disappearing daily although she was adamant early stages!!! 

Yash

i still go to the hairdressers (although it’s not the joyous occasion it once was) & I still dye my hair but perhaps more carefully.  I understand exactly about your hair looking dead it’s as if the structure changes?!  However, when I can manage hairdressers it does make me feel ‘normal’ for a little while.  Only you can make the decision re taking medication but despite my huge reservations I decided I had to give it a go.  

I wish all dermatologists would read the posts on this site.  It seems to be a geographical lottery and scattergun approach to interventions! 

Minter- Thank you for your thoughts on the lucinda ellery system, it does seem to be a great solution.
For me, the hair loss is so advanced that I would also need the top mesh and a parting and side pieces so quite extensive.
I would need a LOT of tape for both the top and the sides. I'm not sure I could deal with the maintenance visits, I still travel a lot so fitting in a visit to London might be sometimes restricting. Also, like you, I'm not sure about having something 'attached' to my head that I can't remove.
I'm wearing wigs now full time and liking the look. Time will tell how I manage them out in the wind, playing golf etc.
I'm going on holiday tomorrow to a very windy place so that will be a great test.

 Liz - no problem, I am glad we are able to share our experiences with what we are doing or not doing for FFA, what works for one person might not be the thing for someone else and vice versa! 

Enjoy your holiday and hopefully your wig/hair will be the last thing on your mind while you are relaxing :-) 

Afraid,

I take Plaquenil twice a day. Each pill is 200mg. I take finasteride (2.5mg) once a day. I don't have female pattern hair loss but my dermatologist prescribed it anyway. She believes it helps with FFA. I use Rogaine once a day. I'm supposed to use tacrolimus every day as well but it's so greasy that I only use it a few times a week. 

Hi all, thanks for your advice.

One thing I am wondering which I haven't seen in any website about FFA, is stress a contributing factor. They say stress causes other types of hair loss. I think my hair loss started after I got married - I look at photos of me back then and noticed that my side burns started to receed but it could just be coincidental.

My other question, have your partners been supportive and understanding? 

@Yash I struggled with hair loss since I was diagnosed with chronic kidney disease in 2013, a life changing event. Then, my last big flare with Feb. 2017- 2 months after my husband was laid off from his job of 18 years. I do think stress is one component of many that sets off this stupid disease.

Hubby is very supportive-whatever I think I need to make myself feel better he'll do what he can. If I want to look at wigs, he will drive me and help. I'm hyper critical of my hair and he's aware of it-lets me know if my hair has gotten out of shape in the wind etc..I couldn't ask for a better guy. :)

Thanks Ammie 

i will try and see see if I can increase plaquenil & see if I can access finasteride.  How long did you take medication before it stabilised your hair loss?  I’m beginning to lose hope. 

Did anyone see the feature on the 100,000 Genomes project on the BBC news the other day? A number of us with FFA are part of the research and by the end of this year they said that they should have mapped many thousand gene profiles and would be able to identify where many individual rare diseases come from....I'm not scientifically minded but I get the idea that they will be able to identify the gene and therefore tailor treatment options for people with a particular condition and then look at possible causes and cures......Lets hope that FFA is one that they are able to profile. The dermatologist I saw last year thinks it might happen :)

For those of you taking Plaquenil, what are the side effects? And Finasteride is normally prescribed for prostate cancer (!).  Do these seem to help at all? I am going to see my specialist in March, and when I saw her last at the end of November, she implied that that is our next step. I am very wary of taking meds internally. 

The person who was supposed to get back to me with an estimate for hair extensions hasn’t done so - I honestly think it’s because it isn’t « bad enough yet. » Which is fine. 

I have been thinking of how 12 step recovery applies to just about everything in life we can’t control. I am powerless over this (step 1). I have to live in today. I like to think that if I can stay in today, I will at the very least reduce my stress level. 

Speaking of which - someone pointed out my hair loss to me (I didn’t  notice it myself!) for the first time almost 3 years ago. I was getting a second master’s degree at the time, and my doctor told me it was from the stress, and not to worry (ha!). So for almost two years, I did nothing, while watching my hairline and waiting for it to grow back (double ha!). I remember the feeling in the pit of my stomach that something wasn’t right, because then I noticed hair loss not just on the sides, but at the top of my head. I remember looking in the mirror, feeling queasy, then turning away, telling myself it was just menopause and it would stop/grow back/ etc. I would get my hair brazillian-ed and blow dried, and noticed the hair loss, and the thinning, and just push it out of my mind. I was given my diagnosis last spring with just a photograph and an internet consultation, then it was confirmed by a specialist. I called my mom, and cried. I couldn’t sleep. I couldn’t eat. I went to a party, and stared at everyone’s hair, and could barely speak. 

I have started to read here every day now, and I find it helps so much with my acceptance. I notice that we are one of the most active groups on here (yay us!), and because of all of you, it feels les like a catastrophe. 

One thing we learn in psychoanalysis - everything in life is about loss, and creativity. That’s overly simplistic, but creativity is how we adapt to loss - from birth on. So there you go. 

Hi Halfbakedwho

Like you, I thought that my hair loss was caused by stress, and that it would return once I left my stressful job and found something less stressy! I had spoken to my Dr in the Autumn of 2014 after noticing more and more hair loss over a couple of years - but when the hair loss just continued, I had to push my Dr to get a referral to see the Specialist. After yet more waiting, I was diagnosed at the end of 2016. So I guess, that I have had the condition 5+/- years.

Creativity is definitely part of the way we all cope and get on with this crappy condition (I refuse to think of it as a disease! Apart from the receding hairline I am generally fit and healthy and won’t think of my body ‘having a disease’!)

Have to try to keep smiling!

xOx

Hi Liz

Is the Genomes Project the one that they were doing at Guy’s? I didn’t see the BBC News about it. Do they hope to have the results by the end of 2018?

If it is the research project at Guy’s, I was hoping for the feed back at the end of 2017. 

It always seems to be the Waiting Game - Time - and Time = More Hair Loss!

We need a ‘Trigger’ to be found that Halts or preferably Reverses  this condition :/

xOx

Hi Yash. Yes my partner is totally supportive and understanding. He couldn't care less what I look like as long as I am healthy and happy. He loves me for who I am not what I look like. I'm actually sitting beside him on the couch as I type this, with my bare head.  We actually joke about it, then again he has a bit of a wonky face so we are a right pair!!

Oh Helen, you really made me laugh (out loud) with your last sentence.  :)) Although it would not be fair to leave it at that because your positive attitude has also inspired, motivated and given me strength.  So much so that I have made an appointment at a 'Second hair' (as it is called here in Germany) salon for a consultation next week. I feel a little more freedom coming back. Thank you. 

@Halfbakedwho I think we could sit down and talk all night about the dilemma of whether or not to start the medication, we seem to be at a similar stage in the thought process that is evoked by our "little" (the size differs from day to day)problem.  I spoke to my husband yesterday and had a revelation...I am quite certain that I will not get the medication past my lips, as my daughter said " mum it's against your life philosophy".  She is right! I then said to them both that if I don't go down the medication route I have one choice that will work for me and that is to be a warrior.  Stand up straight and tall arms wide and embrace it.  I will not crash and burn, I will sometimes feel small, I will sometimes feel hopeless and sad but I will be in control because I am a warrior.  @all: I joined this group about a week ago and since then I have read posts everyday.  At first I considered stopper the email alerts but decided against it.  This group has accelerated my acceptance and although I could feel different tomorrow today I am strong and let's be honest today, right now is all that counts when taking our feelings into consideration.  Let us take control, be it that green smoothie every morning, staying away from gluten or disciplining ourselves not to look in the mirror at every opportunity...or all three;). Let's find that happiness that we have in our lives and expand upon it.   

Helen, I too loved your comment about your husband. I married a man with no hair, so we can be bald together. 

Rachel, I too have decided to opt out if the medication. Haven't told my dermatologist yet. I hate taking even something for a headache.

Yes, it is devastating and I hate looking in the mirror but I guess, there are worse things out there. 

Bald is beautiful. We don't need to hide behind locks.

Today I get a little closer to finding out how different chemicals in sunscreen products and other cosmetics affect me.  It's been a weeklong process of testing over 100 chemicals.

Also, in response to husband's reaction to my FFA...When I first got diagnosed eight years ago, I was crying and he said "You're crying because you're losing your hair?"  I felt so vain I did nothing about it for years.  Now I'm turning over every stone to stop this affliction.