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Comment by Rachel Germany on January 22, 2018 at 2:04am

Hi Jess, thank you for your story.  I too read in a study that initial eyebrow loss correlates with less severe prognosis, but having lost the hair on my extremities who knows. My hair loss seems to be very gradual (touch wood. I drink a green kale smoothie with lots of turmeric(don't forget the black pepper) and fresh root ginger everyday.  On the days that I don't manage the smoothie I then take turmeric capsules. Every few months I take a course of milk thistle capsules and of course I have done some gut cleaning with lactic acid products in some extremely good pre- and probiotics. Oh and In winter I take cod liver oil. I don't take any medication, but do often think that a merina coil that I had for less than a year was likely a trigger for ffa.  Jess, how is the progress with your hair line? Have you had your brows microbladed?  

Comment by Jess on January 21, 2018 at 7:26pm

Oh, as a follow-up, the same studies showed that body hair involvement was correlated with more severe prognoses. Since I lost all of my eyebrows first and also have body hair involvement, I'm not sure where that leaves me.

Comment by Jess on January 21, 2018 at 7:21pm

Hi, Rachel. I actually lost all of my eyebrows over the course of about 18 months before I noticed any hair loss on my scalp. I kept thinking it was a phase and they would grow back, but after about a year, when they were nearly gone, I decided to get my thyroid tested. My thyroid was fine. One day, I noticed that nearly all the hair on my arms was gone, too. I went to a dermatologist, and she seemed rather indifferent about it all, and told me my eyebrows didn't looked scarred, and that it's hard to tell what could cause it or if they would grow back. She gave me some latisse and Elidel. Well, of course, I wasn't satisfied with that and spent my night and days scouring the internet looking for answers. I came across FFA a few times, but didn't give it much though because I didn't think I was losing hair from my head. In the meantime, someone pointed out to me that I had a couple stray hairs that seemed to be growing out of the sides of my face around my side burn area. Upon closer inspection, I started to question if that's where my hair actually used to extend to. I also looked more closely at my hairline and realized there was some paleness and little pink dots around the the fronts of my ears and temples. Another person commented that the skin on my face kind of look like a the texture of a basketball in certain light (that's always nice to hear). Well, I continued searching about eyebrows and came across an article about eyebrow involvement in FFA, and how it's extremely common. They typically fall out on the outer ends first and then the loss proceeds inwards, just like mine had. It then listed all the accompanying features of FFA, paleness, lonely hairs, papules, and ding, ding, ding- I realized what I had. Of course, I was horrified. Anyway, a few studies I've read have correlated eyebrow loss, particularly as the first sign of FFA, with less severe prognoses. I guess a simple yes or no would have sufficed, but there's my story, lol.

Comment by Rachel Germany on January 21, 2018 at 6:26am

Hi everyone, something has been busying my mind over the last few days...loss of eyebrows!  Now to be honest I've been occupied with my eyebrows about four and a half to five years now but what interests me at the moment is the fact that my total eyebrow loss and leg and arm hair loss happened before my hair loss whereby most of you lovely ladies still have some or all eyebrow hair.  Is there anybody who is experiencing the same run of things as I? Also, I would like to tell those of you who are going through the eyebrow loss experience, it my feel like the worst now but you can learn to fake them and people will not notice.  There are so many good products on the market and for swimmers and surfers there is a clear sealant from 'Bald girls go to lunch'.  I went snorkelling with it on my last summer holiday on Crete.  If any of you is having a hard time with your eyebrows please don't fret.  Check out Carly Severn on the internet, she's an alopecia and one of the most attractive young women I've seen...check the eyebrows...they really are painted on!!! Have a lovely day and think of one thing you're grateful for before putting your phone down now.x

Comment by Halfbakedwho on January 21, 2018 at 3:02am

@ Jess - yes I am better - it was such a friggin’ nightmare after the diagnosis - I suppose it’s like that for everyone. We see these horrible images on the internet, we hear « progressive and permanent » - I found out about myself through an e-mail sent by a clinic (I’d sent in pictures of my hair). I was in a ladies’ room stall, right after a work meeting. You see the image - I won’t go into details. My heart started pounding, and I called my mom. And promptly went shopping. Then came the sleeplessness, thinking it was a dream, a mistake... this was only just last spring. I have lost more hair since then, and wonder how I could have stayed two years in denial - at this point it’d be hard to maintain. (Denial I mean). And I only went finally for a diagnosis because a hairdresser insisted, and I was admiring a woman’s thick curly hair in a store, thinking of my own... 

I have taken up enough space here for now - must start my day. 

Comment by Afraid on January 21, 2018 at 3:00am

Thanks so much Halfbakedwho & Illustr8r!!! Have a wonderful Sunday x 

Comment by Halfbakedwho on January 21, 2018 at 2:49am

Hello Afraid. I really don’t want to go the Plaquenil route either, but I’m not there yet. I use humour as a defense - I hope rather well sometimes, other times a bit forced I’m sure. I obsess over my eyebrows, which some days I think are thinning, other days I think are fine. My own judgement isn’t reliable.

My hair is so crazy thick and curly, that it hides the spots that are going in the front. No, I don’t see hair going in the shower, etc. - that is not, apparently, the sort of alopecia I have. I see more thinning and small bald patches in the front, that’s eating its way back in a band around my face. I’m most self-concious about my forehead which is getting larger. 

Now- if I seem to have a bit of distance and equanimity (« seem to » being operatively important!!) it’s probably also because my husband has alopecia areata - NOTHING left on his head or body. And he really, really doesn’t care, which is why I love him (he’s not an appearance kind of guy). Not that I want to go that route (please!!). But he’s happy, he’s willing to add all the hair-crap I need to our budget to look okay (in other words really supportive), and only worries that I worry too much about it. Even my sons hug me and say, « we will love you when you’re an old, bald mom » which just makes me laugh. 

I take heart from you guys and everything you share. I tried the no-gluten no-dairy, but can’t easily stick to it, and my dermatologist and doctor were very non-committal about its impact, so - « bof » as we say here where I live. I love your solutions for covering it - and though so far so good (knock wood) am keeping a mental inventory of what I’ll do in a few months (or hopefully a few years) to look okay. 

I try to keep my face and body as well as I can. I love my work, have good friends, a great family and two cats (again, is the order important here ; ) ? ) Now this doesn’t mean that in two weeks or two months I won’t be on this forum completely devastated by this weird weird illness, and my strange new head. But I’m okay today. I’m off to a language class this morning, and a writing group this afternoon.

But I’m also a fake extrovert, a dysthymic double-depressive, and anxiety has glued me to my bed a few times in my life. But when that happened - it had NOTHING to do with my hair. So all this to say - I think I have to fight for my life - or to be more clear - the LIFE in my life, if that makes any sense. 

Sunday morning nombrilistic ramblings that hopefully gave some of you something - or else it was all for and about me, which I suppose is okay too. Take very good care. 

Comment by illustr8r on January 21, 2018 at 2:31am

@Afraid I always have hair in the sink, some days more than others. I never know if it’s more or less than “normal” people or not though. My hairstylist tells me how I am doing in that regard and she’s been positive of late. I know it’s way better now than my flare a year ago when strands would float down in front of my face. 

Yes, a sense of humor and a fine selection of curse words is needed to manage this condition!!! Dammit.

Comment by Halfbakedwho on January 21, 2018 at 2:16am

Oh big hugs to you Illustr8r. I hate bad hair days too. BUT- no one thinks our hair looks as bad as we do ourselves. @ Yash - I know - I barely ever shave my legs. But other things have hair - hmmmm. Why does this disease pick and choose? Do I really want to know that? 

Comment by Afraid on January 21, 2018 at 2:11am

Everyone seems to retain their humour despite this silly condition.  Well done!!! We should compile a list of things that are helpful in keeping us going?!  For me apart from my partner and son, my ‘therapy’ is yoga, a dance lesson, hypnotherapy, guided meditation, walking.  I am managing at present with ‘hope’ that plaquenil will kick in and save the day (although deep down I realise this will probably not happen).  I also can ‘hide’ the loss so I celebrate having my hair but I have no idea what I will do when I am in fact bald....

my question today is.... does anyone experience constant hair fall?  I run my fingers through my hair and full strands of hair fall out or it simply seems to float down from my head just as a reminder (as if I could forget) that my hair is disappearing :-( 

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