It’s always good to hear from you @ HalfBakedWho!

So, has THIS happened to you ladies? My hair had some issues a few weeks ago but it’s doing well-shiny healthy and no big sheds. BUT Monday I got a huge knot in my good hair, towards the middle of my hair. Not sure how-but there it was. I must have pulled out about a clump of 6-8 hairs. The end of the hairs were tied. Since Monday I have had a shed from the same area-seeing loose hair in front of my eyes. I pull it and it comes out-the ends are all curly. It’s freaking me out. I’m using Clobetasol again. 

Hi, my hair gets a big knot in the middle also. When I have the knot I wash my hair with shampoo and then a detangler. I have Shea moisture detangler. It eliminates the majority of the tangle. Thanks.

Thanks for the info illustr8r, I'll try the no rinse one next, the rinsing is a pain! I've not had any shedding or knots like you mentioned, I think my hair is too short now to get all tangled up!

Halfbakedwho, Haha glad you cured your FFA!

But, I know what you mean- I am 54 and I keep thinking ok, by this time next year my hair will be gone, other days I think well if it just stops now I can deal with my hair now.   I don't think I could tolerate a full-time wig either in fact I know I couldn't as when I tried the LE intralace it drove me batty not being able to take it off.  I'm almost a 100% certain that when the time comes I will shave my head completely and when needed or wanted use a hat, scarf or wig.  I'd rather have a completely bald head then a bit of scraggly hair left on the back of my head if I am hat-less, scarf-less or wig-less.  I know this because my mother has FFA and I see what is in my future for my hair and it is sad to see. 

It would feel oddly better to me if I had a close or even not-so-close relative with this. I've always been the "weird kid" (what you're not surprised) and this just adds another notch to that scale, a peg to the left, a statistically significant item that pushes me further out of the orbit of the so-called normal bell-curve. So maybe it's a relief to hear it's an epidemic - no not at all - something is terribly wrong if this is an epidemic. And like all the whistle-blowers for all the other reasons (to be current) this is complicated and unwelcome if necessary news. 

I am feeling weird and flu-ey and am leaving for Paris for a conference so I can't pay attention to it too much. 

As for knots, my hair is generally always more or less in knots - bc curly. So I sort of commiserate but again it's my normal so welcome to my world. 

I don’t know if any of you watch the tv show comedy “Superstore” or not but the season 5 premiere featured an unfortunate not funny to me skit on female hairloss. 

A lady was trying to buy a hair care product and the character Cheyenne wouldn’t let her. Other characters intervened blah blah and then the lady said,”the women in my family all have male pattern baldness” or something to that effect. She then flipped up her bangs and she was FFA bald! No sideburns and up and over bald. 

I looked at my hubby and said, “not funny.” He agreed.

I wonder if someone in writers room knows of or actually has FFA and was just trying to make light of it. I was a bit shocked and sad-and I’m not easily “triggered” as the kids say these days.

Never watched it, but I suggest writing to NBC or the show's producers about the insensitivity of what was supposed to be funny, but offensive and hurtful to you and women with hair loss. This is an opportunity to spread awarewareness of FFA.  How about some letters the editor's of your local newspapers (if they still exist) or comments on social media.

Halfbakedwho, Hope you feel better in Paris! I guess having a mother with FFA does give a sort of of explanation as to why this is happening since I apparently inherited this nightmare from her so it doesn't seem like so much of a 'why is this happening to me mystery'.  Though since we barely tolerate each other it doesn't make it any easier to deal with :-(

My hair has been shedding more lately and feels thinner. Could this be a seasonal cold weather shedding? I'm looking at wigs and toppers again after using a visor or hairband to disguise hair loss for about six months. My hair seemed better after starting Finisterade for about the same period of time. So frustrating. Has anyone used a laser cap?

My lone red dot.

I had a minor shed after I returned from a trip and about the same time the seasons changed. Things settled down and my hair has been really great. I even got a compliment that my pixie looked like Charlize Theron’s new do. Glorious!!! Then, on Friday I woke up with a tell tale red dot in my widows peak. I got greedy. Thought I was in the clear. FFA said,”Sorry, girlfriend! Bwahahahaaaa!”

I'm sorry illustr8r, FFA is really horrific with it's ups and downs-

though it is awesome that you got such a great compliment on your hair!   

Sometimes I wonder if I could have had ffa for years and not realized exactly what was going on until recently. I have always had a "big forehead" and I have always shed lots of hair all the time (in the shower, in brushes) but never paid it any attention. The weird thing is I feel like I see less overall shedding now but what little I do see if directly from the hairline. Sigh.

I'm pretty sure it was the same for me- funny thing that made me start to wonder what the heck was going on was that I was burning my forehead for a couple years off and on with a straightener or curling iron and I was like (along with my hairdresser) why is this happening more and more often and why am I so clumsy!?

Until I finally realized that my arm hair had disappeared and my hairline was actually receding it all made sense as to why it kept happening! My hair now (3 years after diagnosis) is noticeably thinner and my hairline is just over "2 fingers" from where it used to be (probably more like 3 but hey there is the whole denial thing popping up again haha :-/ )    

I've said it before, I sometimes wish I would wake up one morning and it would all have fallen out and then the decision would be made for me.  

Then I would be done with every single morning of trying to get my hair to look "normal",  constantly fiddling with my hair to make sure it looks "normal", avoiding mirrors because that way in my mind, I can pretend my hair still looks "normal", praying that it is not windy or sunny so my shiny scalp and white band of nothingness are on full display, also wanting to cry because I tend to get really sweaty on scalp/face and then I just look like a weird sweaty freak which is one reason why I haven't gone the "helper hair" route because I would just walk around sweating all the time, the other is that not only would I be sweating, I would also be scratching my head like crazy as hats/scarves anything on my head really irritate me. On the other hand if/when I shave my head, which I've decided to do when the time comes, I know I'm way too old to be edgy and hip with a bald head so I will just be a strange middle aged lady with a bald head who looks really weird.

I hate that this is happening to me, I hate that this is happening to all of us here and to all the women not here who haven't found this forum.  

I'm getting a divorce, so soon I will be a single again and because of this disease destroying what little confidence I had and also destroying what little looks I still had going for me, I know I will now be alone for the rest of my life and am planning accordingly.  Because of this disease I will always be the weird looking sweaty (with or without a wig) grandma (maybe someday) or aunt or neighbor or co-worker with the " strange hair thing and the thank god it's not me's whispers behind my back" going on until I die.  I wish I could just fade away to someplace like a deserted island where no one will notice me and I could just have a little house and be alone, it has gotten to the point that I am avoiding old friends and going out and doing stuff as I don't want anyone to see what I am becoming and it is easier just to not see people. I only have one child and they will be off on their own doing their own thing with their own family eventually and my siblings have their own families to worry about so....yeah I see now that it is already starting to happen, I will actually fade away and be that strange lady who lives alone down the block and is the house to avoid on Halloween!

Anyway, sorry about how this spun into a whole poor me thing, but, no one else gets it unless you have FFA like we do and I am so grateful we have this place here to come to and sometimes it just all has to be said to get it all out.

Oh boy Minter, don't be sorry for venting how you feel, I for one (& I'm sure many others with FFA/Lpp here & elsewhere), have total empathy & understanding of the feelings & thoughts you describe; I get it 100%. I also sometimes feel like escaping to that fantasy desert Island idea, especially as the loss slowly continues to creep back further & further, I'll come with you. Noone to stare or judge you, whether it be with or without an odd looking hairline, a shaved head,  a scarf, no makeup, not having to 'bend over backwards' to try & look what's considered 'normal' or expected to fit in amongst society, socially etc. The long term, chronic, recalcitrant nature of this disorder can be so bothersome & exhausting, psychologically & emotionally, to live with. I've been feeling more down than usuall these past few weeks, dealing with the hairline moving back further & trying to feel normal, trying to keep up the positivity .... experimenting with scarves to wear as headbands (at home); but just not feeling right or confident wearing it out in public. Have had same thoughts that if it all just fell out in one hit, the decision of whether to shave &get a wig, wear scarves, whatever to disguise the odd loss would no longer be a quandry but a necessary adjustment.  Yep, Minter I truly get your feelings, hugs to you, ..no better place to 'spill your guts', raw emotions than here, where others are walking in the same shoes   xxxxx

Hi Minter, You should never fear being alone. I have been reading this group for a few years but never post. You are always so positive informative, and knowledgeable. I don't come to this site for every post but I always do when you comment. Please don't isolate yourself. With your personality you should have many friends, both men and women. Don't sell yourself short. You have lots to offer!

Thank you ladies, I will admit I did feel a lot better for the rest of the day!  Like a weight was gone for sure- I've tried to explain this stuff to (female) relatives and friends and they just don't get it :-( but you guys do and sometimes it just has to be all let out!  

Though I remember when I first came here, I was full of bravado, oh what's the big deal, I'll shave my head or wear a wig or whatever! Now the thought of the above fills me with dread.  You all are the best and I am so glad to be able to be here with you all!

Hi ladies, I read the comments you all post but rarely post myself. I so understand all the comments, and it is surely a dreadful disease both physically and emotionally. No one else gets it, that is for sure, except other sufferers. My husband just says men go bald what's the problem, I still love you whatever. I know he is a good man but this doesn't cut it with me. I have suggested I am going to buy a wig for when it is too bad, (so far lost 1 1/2 " from front hairline, and very thin sides), and he then thinks I am becoming fixated. ....  not a help.  

I think a wig will be the only answer, but then I am terrified of looking really silly. How do you pick a realistic one, where to go, not many options in rural Australia. It is so good to be able to vent to others who understand totally. Thank you. 

Many (((hugs))) to you @Minter. XXOO  

It’s such a awful disease that takes so much little by little that others take for granted. Sure, it’s “only hair” but it’s self esteem, confidence and what makes you. I hate that I had “Brooke Shields” eyebrows back in the day and the trend now is big bold brows. I had that but now mine have to be tattooed on every 2 years and the hair I have in my brows grows in funny directions.

I’m very thankful I have the space to talk to you. :)

Hello everyone! I have good news! CARF has released the registration link for the April 2020 conference in Nashville TN. I’m honored to be part of the conference planning committee and we are planning so many wonderful things that address all aspects of our disease - the physical and emotional, and lots of practical tips on camouflage techniques and guidance on how and where to find resources. You can learn more and register at www.carfintl.org

This conference is worth the investment in yourself. It’s where I really started to get answers and more importantly start relationships with other women who share a commonality in FFA - relationships which continue to this day. 

Hugs to all of you this morning! 

Hello everyone, it's been a while. CurlyK I love your new hair. I just tried to catch up a bit - Minter I'm sorry that you're going through a hard time. 

I have lost a lot of hair this fall; I find hair everywhere - all over my computer, in our food, on the rugs, and it's coming from right at the top of my head where it's nice and visible. My easy-breezy denial is not feeling so easy-breezy - my forehead is very forehead-y. There is numbness - that telltale end-of-follicle sign- right through to the middle of the top of my head. And there's also a numb spot on my crown. 

On the FB page, and on Instagram, there's a very courageous and tenacious woman who has overhauled her diet which now excludes everything but pumpkin flour and wheatberries. What are wheatberries? Are they the pink cereal that used to be in Franken berry when I was six? Probably not. 

I am not so courageous nor tenacious. 

Has anyone had a serious and visible slowing of their illness thanks to Finasteride? I was thinking of trying it again. I am afraid of side effects, but my GP thinks it might be worth trying again. Otherwise, I'm thinking of heading back to the fake-hair franchise downtown to hear what they might offer me. 

In other news, I no longer use Botox and other injections, so I have had, as we say in French, "un coup de vieux" (looking a lot older quickly) between my hair and my wrinkles and general sagging face. I am tired of spending money on those injections, which none of my friends here use. It's also not really a French thing - women here just let themselves get older naturally - and more or less gracefully. 

So glad you are all here, please take care of yourselves, big hugs to Minter (and all of you). 

I don't post often but I wanted to let Halfbakedwho and anyone else my results with Finasteride. I am most pleased with the nape of my neck. My derm thought it was more dermatitis than FFA, but it had a red inflamed blotchy area, and mostly bare of hair. I convinced her that it wasn't a birthmark. Family members would have told me if it were. Be that as it may, fine hair has grown back. I have a couple more eyebrow hairs. The top and sides are about the same. Lately, though I have noticed more hairs in my comb and brushes, so have added a laser cap/3 times week. Too soon to tell. Besides the Finasteride, I use a topical steroid if red bumps appear. Also, 5% Rogaine once/daily. CBD oil twice daily. I started seeing hair grow back with the CBD oil, would be interested in hearing from Robin and how she is doing. It is a lot to throw at my edges, but baby steps,.I am very self conscious in the toppers and wigs I have worn, and am trying to work with my fine, straight stick hair and FFA. I react to many commercial products, so use products that are as pure as possible. This group has been a wonderful source for me. Thank you all.

Forgot to say I started Finasteraid last Feb. 1/2 pill daily. CBD oil July or August of 2018.

Hello everyone 

I haven’t posted for ages but still check site and love to read your posts.  Keep thinking I’ll post with positive news but....grrr...none really.  I take heart from the group support.

i continue with acupuncture, yoga, dancing, 1 tablet of hydroxychloroquine per day but may stop as nooo help (tho’ daren’t stop yet?!) I take 1000mg vitamin c per day.  Further to allergy testing (skin patch test) one year ago and finding allergic to perfume I have tried hard to avoid fragrance etc etc in products.   Have had hair tested for intolerances and since August have removed all foods identified  from my diet :-(.  No positive effect as yet on hair, shedding and loss continue, though have noted some other benefits.  I am at a total loss.  The ridiculous thing is that despite a vacuum full of my hair on weekly basis and the constant shedding as I manipulate my hair (surprised I have any left) and the visible loss and thinning at sides, nape, front and temples I still can’t seem to believe it.  Above my eyebrows four finger width loss (five at temple).  I constantly reframe and I’m grateful for the things I have but crikey it does get me down.  It is so wearing.  Surely something else will crop up and help?! Here’s hoping! 

good luck lovelies, thinking of you all x 

Hi @ Afraid! It is a constant struggle isn’t it? Right now my hair seems pretty stable. I’m actually trying to grow my pixie out to a wedge but I’m not sure I’m going to succeed. My hair just doesn’t lay the same and with more hair it has less volume (if that makes sense) so it seems flatter to me than with a pixie. I was just kinda tired of having my ears sticking out! LOL! My main anxiety and frustration is my skin. The chicken skin on my chin and lower cheeks is really rough looking. I now have atrophy by my temples and sideburns. My left eyebrow has scarring and the right one is starting to get the same weird texture. I have to use eyebrow powder and pencil since I’m long overdue for a microblading refresh-and my skin is so rough in my brows now it’s like I’m drawing on rough watercolor paper. My eyes have settled down but I have use the Occusoft wipes every day. I often wonder what the average 54 year old does to get ready every day and how much they worry about their looks. Aging is one thing-this disease is just cruel. I don’t know. I have more good days than bad when compared to when I was first diagnosed but there are always sad days. Hugs to you all! Thanks for listening as always. :)

Thank you @illustr8r

im delighted to hear your hair has stabilised, that’s wonderful news.  My ears would not allow for a pixie style lol! 

I read an article about vitamin c relating to skin and whilst I haven’t taken supplements in the past I hoped it might be useful with this condition.  I can forward details if you would like to read the article.   I know what you mean about age and effort required.  I am 52 and feel robbed of normal ageing process (which would be bad enough..haha!).  I’ve tried CACI facials.. again as a preventative measure... I’m hoping these will also help.  

here’s to more good days!! X 

Hi! I just wanted to remind everyone that the bi-annual Cicatricial Alopecia Research Foundation (CARF) patient/doctor conference is coming to Nashville, Tennessee in April 2020. I'm part of the conference planning committee and I can tell you this will be the best one yet! In addition to hearing from world-renowned hair loss experts/physicians, we are adding in sessions on dealing with our disease emotionally and physically (morning yoga, anyone?). We also have some neat surprises planned too. 

Give yourself a gift this Christmas and register for the early bird pricing by January 15. You'll receive two and a half days of information, practical tips, and best of all, have the chance to meet others who struggle with the same issues and make some life-long friendships. 

You are worth it, beautiful one! 

http://www.carfintl.org/news-and-resources/patient-conferences/

I've attended 3 prior CARF conferences, and they were well worth the time and cost.  I'm looking forward to Nashville!  I'll also be co-presenting on Tips & Tricks. I highly recommend attending.  Guaranteed, you will not be disappointed.  

Ive been recently diagnosed as well and just joined the forum. I'm reading about a lot of members stopping botox and various skin products. Well I inherited FFA from my mother . She passed away two years ago at 90. Her FFA stabilized without treatment since she never was officially diagnosed, I know she had it because of her loss of frontal hair and complete loss of eyebrows was how  exactly how I presented. She never had botox or used sunscreen in her life. Her only makeup was eyeliner and of course brow pencil . She also used an old fashioned face powder made from rice flour . I have a feeling, and I may be wrong, that the reason there is an epidemic of FFA is basically ' recognition' . Once an illness is recognized there's always an increase in diagnosis . I actually saw two dermatologist for different skin issues and neither recognized my FFA . I finally diagnosed it and went to an Alopecia Derm specialist . Now I'm praying that mine stabilizes as well, although I am going to get treatment.

Hi All, 

My dermatologist has been mentioning the possibility of a hair transplant to give me something other than bare skin at my temples. It’s such a new procedure for us that they can’t guess what the long term result will be. I’ve just found this article though that I wanted to share : “Hair transplant in frontal fibrosing alopecia: a multicenter review of 51 patients”, Vano-Galvan et al (https://www.jaad.org/article/S0190-9622(19)30800-X/fulltext)

So knowing it’d be about $10K (AUD) to do the temporal area & only a 41% graft survival at 5 years, would you do it?

Happy new year everyone & here’s to wishing for a miracle cure this year. 

GLMV,  hello and I also inherited it from my mother-  she was diagnosed with all sorts of different things along the way and is still convinced it is a form of lupus causing her hair loss.  I also went to a couple different doctors before I was 'officially' diagnosed and that I think was partly from me going in and saying I think I have FFA!   Since being diagnosed 3, well now 4 years ago, I see sooooo many women when I am out grocery shopping or just out in the world that appear to also have FFA, especially much older women- chances are they have never been officially diagnosed and just go with the thought that it is old age hair loss I guess.  Just a side note, I am not taking any meds for this, especially having seen my mother use topical and oral (prescribed) treatments and nothing has worked.  

Hi Lu, 

TBH, I don't think I would unless it was 100% proved that it would work and that it would stay working!  I couldn't imagine going through that pain, along with the hope that this is what will give me my hair back and then in 5 years it is back to square one :-( 

From what I've read hair transplants do well initially if your FFA is somewhat inactive but the long term results are variable with the majority of recipients loosing most of the transplanted hair after four years. There was a case of a woman whose transplant was very successful but it was attributed to the fact she was receiving chemo for breast cancer . Chemo is immune suppressive so that's logical

 I guess doing a transplant makes sense depending on your disposable income. If 10,000 AUD is what you make in a week then I say it makes some sense. If that's your income for a month then I don't know? Jeffrey Epstein, our local transplant specialist has a study where he claims most people are very satisfied, but of course what would he say, he makes 7 thousand US dollars for each eyebrow transplant .

Hello everyone,

I haven't posted anything in a while but I do come here to read comments and, I guess, see if someone has found a miracle cure.  

Last February I went to see a lady to talk about bonded hair and what all it entails so I could be prepared for it when the time comes to go that route.   She owns a salon called Alternative Hair Replacement in Alabama.  She looked at my hair loss and confessed that she has never heard of LPP or FAA.  She told me that she thought there was a scalp treatment that could help me keep my hair looking good for the next several years before I had to think about bonded hair. It is called Capilia and was invented by a team of trichologists.  Since then I go once a month to her salon and have a treatment for a deep scalp cleanse done.  I use the Capilia shampoos, conditioners,vitamins and growth serums as well.  Although this has not totally stopped the hair loss at my forehead, it has made the hair follicles that are not infected with the disease stronger and fuller.  I like to think that the progression has slowed, but it hasn't stopped it.  I'm not sure anything will.

The owner actually does the bonded hair for the men and women who come into her salon and I have a regular young gal that does my treatment once a month.  She is sweet and adorable and she absolutely LOVES wigs,  There is nothing wrong with her bio hair but she almost always wears a cute wig of some sort.  She says she has 5 of them and switches them out from day to day.  She told me that it's so easy to just pull her own hair back and pop on a wig.  I have to ask her each time I go if it's her hair or a wig because I sure can't tell.  I hope that I can have that same great attitude about wearing hair when the time comes for me to have to do so.  I'm trying really hard to save my hair and get to acceptance of what I have waiting for me in the future.  

I still have many sad and blue days about losing my hair and worry about what is coming.  But at least I'm not crying like I used to.  My job and my family keep me busy and are supportive so I just take one day at a time.

Hugs to all of you! 

Hi everyone. I got this notice today about the CARF conference: 

Don't Miss the Early Bird Registration Cost: $300

Expires Next Week - January 15, 2020 

View the Program-at-a-Glance

The CARF National Conference offers you the unique opportunity to connect with the leading physicians and researchers in the cicatricial alopecia field and meet members of this special community. General and breakout sessions will address the medical and emotional aspects of living with cicatricial alopecia. A detailed conference agenda will be available no later than February 1 on our website.

www.carfintl.org/2020Conference

Wanted to share to make sure everyone was aware of the early bird registration deadline. I'll be there - I can't wait!

Hi everyone,

Has anyone seen Dr. Lindsey Bordone at Columbia in NYC? My NJ dermatologist referred me to her stating that she is a dermatologist who specializes in hair issues and is doing clinical trials.

Might give her a shot but wanted to hear if anyone had experiences.

Thanks! 

Oh hello everyone!  Just having a ‘bad hair’ day and thought I would ‘connect’ with this lovely group.  Wish I could fly over to the CaRF conference it sounds good.  Hopefully some positive news will be shared.  I remember Curly K’s amazing note taking from last year was so helpful to those of us unable to make the trip, 

I continue to read this thread like everyone hoping for some new miracle.  To add to my list of things to try I’m taking iron and vitamin  supplements. Recent hair analysis revealed deficiencies in vitamins d, b3, 6 & 12 (no evidence base for hair analysis I’m told but desperate measures lead to trying/believing anything).    After 2.5 years of hydroxychloroquine I’m thinking of stopping... whilst it’s not stopped hair shedding or alopecia it does seem to have reduced burning and itching (or would that have reduced/ stopped anyway?). The only things I have left to try is laser /photo therapy and PRP.  Worth a go?  Or maybe my thyroid levels need to be tested again and I push for a more in depth test?  my logic tells me to stop...there is no cure... listen to the experts... my heart tells me never give up the hope that I don’t have this silly condition and something so simple one day will make it stop before I turn to hair replacement...  compared to the first year of complete shock, desperation  and grief...the last year or so I’ve tried to embrace what I have  in the knowledge i will feel much worse when I don’t have my own hair.  I constantly reframe, feel grateful for so many other things and chastise  and remind myself it’s only hair and not cancer or another disease but odd days like today I feel sad and worried about the future and anything else it may bring.  

enough wallowing...
onwards and upwards -  sending lots of luck, love and positive vibes to you all xx 

Hi there! Today is the last day for early bird registration for the CARF conference in April. After today the registration increases $75. 

hi, everyone, it's been a long while. I have been in denial-mode which works for me, and very very busy (so much the better). I have lost a lot of hair on the top of my head. This is a good and bad thing for me since my hair has always been so uncontrollable that having less of it on top isn't entirely unflattering - it's flatter and it needed to be flatter anyway. 

What's difficult - my scalp is numb, or practically numb, all the way through to the middle of my head. I think this doesn't bode well for what's coming. It's sometimes sensitive, though I wouldn't say painful - just irritated. Not itchy. And then the numbness is creeping up more and more. 

I am glad that I no longer feel crazy-panic when I describe this, though I'm not looking forward to needing bonded hair (which seems like the best option for me). My eyebrows are thinner too but hanging in there - a bit patchier but they're there... 

When I think back to 2017 when I learned that I had FFA, and how terrifying that was (no sleep, staring at my scalp, crying, staring at everyone else's scalp)... I can say there's been a positive evolution, just not with my hairline. 

I haven't gone back to see any of the specialists in Paris in a long time - about 9 months ago. It's very hard to get an appointment, and my generalist can prescribe me the Clobestol which is the only thing I honestly take when things feel too irritated. The other things they've prescribed for me sit in a drawer and give me dirty looks (ok I still have a touch of paranoia). The Doxycycline, the Finasteride, the Minoxidil - nah. 

Now I'm writing a novel... I am thinking about taking natural hormone replacement somethings... I tried taking prescribed HRT and though my skin felt so soft and lovely my breasts hurt and I was very grouchy and hungry. If you have any ideas I'm all ears (which are covered by carefully placed hair). 

I'll be in Florida again in February at my Dad's fancy house, but you don't have to drive 2 hours to see me CurlyK, though I really enjoyed meeting you. 

So glad you all are here and sorry for being so silent and now so long. Bisous. 

Rep. Ayanna Pressley of Massachusetts revealed her alopecia a few days ago shortly after voting for the articles of impeachment.   She lost all her hair in a matter of a few months. The posted a video on "The  Root: Black News, Politics, Opinion and Culture." Here is the link to the video and an article.   https://theglowup.theroot.com/exclusive-rep-ayanna-pressley-reveals-beautiful-bald-1841039847

I first saw an article on the homepage of my internet provider Wowway.  I am sure that her story and her being such a public figure will give Alopecia lots of publicity.

She's incredibly brave. Good for her, I hope more women come forward. I don't think her hair loss is from traction alopecia though, it looks more like alopecia areata 

She has Alopecia Areata.  I found out more about it after I posted the comment.  Unlike FFA, Alopecia Areata does not kill follicles, so it's possible that her hair will grow back.

Hello Halfbaked Who & the rest of the FFA gang!  That is awesome you are writing a novel, you write the best posts, so anything you write I am sure will be great!  It sounds like you are handling your FFA as well as can be expected, which I guess is the same for the rest of us- at least for me that is, I've accepted my fate and now I have to make the best of it.  I keep using my Boost n Blend powder on the top of my head (which works wonders) and a brush on powder on the sides in front of, and now on top of my ears, sigh.  It is now only a matter of time until the day will come when it will all be shaved off and I move on to a wig (have to do it this way as the thought of having something permanently attached would make be go bonkers for sure)  I am incredibly sad about it, but there is nothing that can be done about it.  Actually I was watching 'What's Love Got To Do With It' last night and was all into the wigs Tina and the girls wore, if I could rock a wig like Tina, well life will be pretty good I think! ;-D   Hope everyone is doing well and CurlyK, it will be interesting to hear what happens at CARF, though unless they finally say a hair transplant will definitely work, I am too far gone to bother with anything else!  Halfbaked Who, enjoy sunny warm Florida!

 Ive been recently diagnosed although I calculate Ive had FFA for approximately five years. That's when I lost my eyebrows. Looking back at the pictures of my mother I believe she had it too. I'm seeing Dr. Antonella Tosti at the University of Miami. She's a well known alopecia specialist . She put me on plaquenil 200 mg twice a day, avodart .5 mg daily as well as tacrolimus ointment twice a week clobetasol the other days. I'm to use Rogaine 5 percent every morning. Next week I start excimer laser twice a week for 12 weeks. I'm not afraid of the meds and I like the idea of throwing everything at it, while removing meds if and when the condition slows down or stops . If you're going to be in South Florida I would recommend getting an appointment with Dr. Tosti. I found her to be very knowledgeable . I was misdiagnosed by another Derm a few years ago.

I find the ointments to be just awful, Ive had greasy bangs since Ive started 

No - I am not *really* writing a novel - I am playing someone on T.V. who is writing a novel! No that's not true either. I wish I could write a novel, but I lack imagination. I will read other people's novels and vicariously wish I had thought of the story. That's the extent of my novel-writing. It's enough that I listen to stories all day - my head is filled with other people's stories. Right now I should be working on my session notes, but I don't feel like it and so I'm not. 

I am impressed GLMV by you throwing the kitchen sink of meds onto your scalp (and inside). I am too chicken. Soon, Minter, I will have to get myself some of that powder, b/c you can see through my hair on top of my head in certain light. 

I am wondering what my hair will look like next summer, next year - it's not helpful to project but it's hard not to. What disturbs me the most is the numb sensation that is creeping higher into my scalp, towards the crown of my head. I wonder why the disease follows this pattern of starting at the front? Not that there's any "good" place to start - but it behaves like a creeping crud of noxiousness chewing up nerve ends and follicles with little tiny lichen-teeth. 

Now aren't you glad you don't have to read a novel written by me, after that inspired image? You're welcome. Now you go watch something on Netflix like "The Good Place" to not think about scalps and lichen-teeth. 

Halfbakedwho you always know how to make me laugh! Tiny lichen-teeth. Lol!

Halfbakedwho, I love your sense of humour, don't ever change. You do have a way with words & so often put a smile on my face with your posts. I can relate to the odd feeling of numbness on certain areas of the scalp. I often have a sort of raw dry feeling in areas, & I guess at times you could say it has a kind of numb feeling. Hmmm, '"lichen teeth" description .... yep, it 'cracks me up' (in more ways than one), but mostly by that I mean with laughter. Talking about the weird progression from front to back... mine has been slow but relentlessly continuous, .... going on for over 7 years now (since the pain started) .....to be continued, be back soon  xxx

And yet I wonder if all those meds and treatment will even make a difference. My mother had FFA, didn't know it and never treated it. Fortunately for her it ' burned' out and she didn't look too bad when she passed away at 90. I'm just praying mine does too although there's no guarantee.

Hi, I'm back .... sorry had to help hubby with a job. The thing is that about 8 yeas ago, about 6 months prior to the onset of the severe burning on my scalp, shortly followed by obvious loss (to me) of hair from side burns & front across top of forehead, I kept having short periods where an area onmtop of my scalp would feel extremely raw, dry & irritated .... told my hairdresser but when she looked closely at my scalp in that spot she could see nothing unusual ... it was so weird, but of course now I know it was early stages of lichen planopilaris. Even when visiting trichologists & derms in those early days after onset of severe pain & burning, most of them could see nothing obviously unusual about my scalp & as I had a head of thick curly hair, I'm sure they thought I was being paranoid about the loss ..... but I knew something sinister was going on, & one useless dermatologist,in particular, thought I was over-reacting, when I told her I thought I may have ffa & lpp. She said "I have many women patients with that & you don't have it", told me I had seborrhic dermatitis, a diag she persisted with even after my third visit .... needless to say I dropped her like a hot potato, & after consulting another derm about 6 mths later it was confirmed by biopsy that this was indeed exactly what I had. My hair has diffusely thinned over top of my head over the same time period that the front, temples, sides & all around ears has been disapearing... so, for me I believe its a case of ffa & diffuse lpp. But I have chosen a drug free path & the progression comtinues after so many years, well over 7 (& I believe prob started about 2 & half yrs at least prior), slow & chronic .....  Minter, thanks to your tip I've been using boost n blend which helps somewhat, but was wondering what sort of powder you use (with brush) to diguise the whiteness around hairless temples, ears & hairline etc. Does it contain titanium dioxide like many of the facial mineral powders ??? 

 Jules, I use Revolution Hair Powder, it goes on well with the brush and pretty much stays on all day-  TBH I have no idea if it has titanium dioxide in it, at this point it probably doesn't matter anymore as whatever is going to happen to my hair is already happening and that is that, but in the meantime at least I still can fake like I have more hair then I do in front of my ears! 

Halfbakedwho, yes you should write a novel! Or at least a blog! You are hilarious and have a great way with words whether you are being funny or writing about serious stuff, I enjoy your posts very much :-)