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Comment by Kristen P on July 7, 2015 at 4:05pm

I want to provide a more robust/heartfelt answer when I have more time, but did want to mention that my doctor thinks slowing down the progression is very possible, and I have faith in her. I haven't really noticed much loss in the past 10 months. One thing I find with this is that if I shed, my knee-jerk reaction is to think "Oh no, my FFA is flaring!" but then I remember that I've ALWAYS shed more in the summer. I also do not wash my hair every day, so when I do wash, it's two days worth of shedding. I have been on minocycline since October - first twice a day for three months, then once a day for three months, now I'm on every other. I go back in August for a check up, and the goal is to take me off it. My heart has gone out to you, LittleSadEyes, with every post I've read, as I know how scary this can be. I'm at work and in a rush but wanted to weigh in that my doctor thinks slowing the progression is very possible, especially if you are "young" for this condition (and you're obviously so young for this if I am "young" for this at 36 when I was diagnosed!)

Sad in Chicago - what doctor do you see?

Comment by Sad in chicago on July 7, 2015 at 3:42pm

LittleSad Eyes:  My derm told me nothing works.  I tried cortizone in my eyebrows, to no avail, and ouch that hurts!  We would take some malaria medicine, but I would never do that!  I tried Rogaine and propecia, to no avail.  I have since seen a derm who specializes in hair restoration and transplants.  He is not sure it would work with this condition, so has offered to do a "test" strip.  However, the expense of the operating room, staff, etc. is not discounted for the test, so not sure I can afford it -- especially if it does not work!!!!!  Thinking about it and perhaps doing more research.  And yes, all the fuzz, moustache, stuff around ears, etc. -- gone.  No more messing around with bleaching, tweezing, snipping, etc.  That's the good news.  Legs and arms too.  Smooth face, neck and body like a baby.

Comment by LittleSadEyes on July 7, 2015 at 7:53am

LoriO you are so kind and that just means the world to me. I have been checked for PCOS butdo not have any cysts. I actually have very low estrogen and elevated adrogens and cortisol due to Fallopian tube scarring and minimal egg production. I am essentially going Into menopause all because I was abused a few years back by a piece of scum who gave me an infection which permenantly scarred my reproductive organs. It's fairly devastating but as horrible as it sounds the hair loss is worse. I am losing everythjng on my head painfully slowly.. I can't even begin to describe how I feel. I'm sure you know. I feel vvery certain that I have ffa at this stage.. I guess my derm will tell me next week. I am prepared for the worst

Comment by Lo on July 7, 2015 at 7:51am

I would remnants a biopsy before any treatment begins. Many women have had success with treatment slowing down the progression... And/or inflammation. He first step is to find out exactly what it is that we have... You are beautiful and are going to be ok... You will find strength where you didn't think you had it. Please stand tall and take it one day at a time... Believe me...

Comment by LittleSadEyes on July 7, 2015 at 7:46am

Has anyone actually had success with medical treatment ceasing the progression of the hairloss/iflammation? Like has anyone actually stopped it? I'm kind of desperate to know what works best!

Comment by LoriO on July 6, 2015 at 7:47pm

Hey LittleSadEyes, I'm sorry you're going through this.  I've had a tough time coming to terms with my FFA and I'm in my 50s.  With all your symptoms, have you been checked for PCOS?  You have all the symptoms and I think if you get it under control your hair will grow back (unlike with true FFA, which is scarring).  I'm not a doctor, but I would think this would be something to investigate.

That said, if it is something more permanent, you have beautiful features and would look good no mater what your hair looked like.  And no man worth having would ever base his feelings for you on what your hair or body looked like.  It is worth waiting for that guy.  Meanwhile, love yourself, and talk to yourself as if you were talking to your best friend going through all this.   

Comment by LittleSadEyes on July 6, 2015 at 6:51pm

Maybe this will show you... :( The temples and nape are no bad. I have a bald spot on the fight hand top side of my hairline. And it seems like everyting on the right side is effected slightly worse. 

Comment by LittleSadEyes on July 6, 2015 at 6:33pm

Sad in chicago, Donna, I really appreciate your kindness. Issue is i feel like this has happened so fast. Seems like i look back at photos from the beginning on 2014, i noticed that i began to recede then, then all of a sudden by june i had lost a vast amount of hair all over. My nape began to creep up... now by the same time a year later it is just out of control. It's receding to fast now that i can see the changes each day. I wake up and i feel the cold on my nape where it had not been like that before. I have lost whole rows of lashes, my brows are receding from both ends and and look patchy in the middle now. I can even see patches of no growth on my arms. And it seems like it just sped up so fast all of a sudden. I do have the hormones of a menopausal women although i have (weird irregular) periods. It has gotten to the point where i will not leave the house. I just cry. I think about how i will end my life.

I am confused about a couple of things though. I notice around my hairline that i have tiny little vellus blonde hairs where the hairline was. I was under the impression that FFA mostly effected vellus and intermediate hairs (hence the hairline, brows, lashes etc). So would that mean that all other downy hair on the face would be effected? Like the little peach fuzz that everyone has? Mind you my peach fuzz is a little longer because i have like zero estrogen. I am 99.99% sure that i have this thing. It fits too well. I mean, my WHOLE hair is terribly terribly thin and my crown is very bad, but i chalk that up to AGA. It's the temples, nape and hairline, brows, lashes and now arms that has me convinced. I look disgusting. I try to pull bits of hair out around my face to make it look like the hairline isn't so far back but i am rapidly running out of hair in order to do this. Ontop of this i have terribly acne and oily skin. Even on my chest and neck. I know i shoulod be grateful that i still have hair, but i just feel like i am only waiting around for it to get much much worse. This in itself is agony. I am 22. I will never have a relationship. Who wants a girl who cannot have children and is totally bald on her head? There is a boy who i was falling seriously inlove with.. but i have just stopped talking to him. I won't see him. I can't bare it. He will not want me anymore. All he liked me for was my body. Well, i can't even offer that now. 

I don't want to do this. 
I can't. 
I feel like i an suffocating. 

Comment by Sad in chicago on July 6, 2015 at 1:37pm

I agree with Donna.  I would die for photos and hair like yours.  Enjoy what you have, take wonderful care of your hair and yourself and you will see that it may not become as much an issue as others have experienced, such as myself.  I will say that post menopause seems to be the timeline in which the condition worsens, and you are far from that.  Right now i cannot go anywhere without a piece and the summer is troublesome too, but I know that when I am wearing something I feel better and someday you will too.  As one of my friends keeps saying to me, "nobody got really sick, nobody died."  Very true.  Just a pain in the ass to deal with as you get older.

Comment by Donna on July 5, 2015 at 11:38pm

My heart goes out to LittleSadEyes. You are so young and beautiful. It is tough. It looks like you can still hide the hair loss and your brows look great. This could be the case for you for many years. So I would say try and enjoy how great you look now and try not to worry about the future. I think we all know it is not our appearance that really matters in life but at 65 (FFA for about 10 years) I still feel so self conscious sometimes. BUT even before the FFA I always looked back at 10 years prior and thought I should have appreciated that time more. So now I try to appreciate now so that 10 years from now I won't be looking back and thinking I should have. Hang in there friend.

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