Frontal Fibrosing Alopecia

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Frontal Fibrosing Alopecia

This is specifically for frontal fibrosing alopecia sufferers. To share information and support each other.

Location: Dubai UAE
Members: 602
Latest Activity: Jul 14

Discussion Forum

CARF Conference 2018 Notes

Started by CurlyK. Last reply by kevinsstelly Jul 14. 32 Replies

CARF 2018 Conference Notes:First of all, I am so glad I went to the CARF Conference! It was worth every dime I spent – a true investment in myself, but hopefully I can bless and encourage others from what I learned.The CARF staff and volunteers are…Continue

Botox and FFA

Started by 2Dachshunds. Last reply by Shawnaynay Jul 8, 2023. 18 Replies

Hi Everyone: I remember there is a women on here who connected Botox to FFA. I was given the article, Frontal Alopecia after Repeated BotulinumToxin Type A Injections for Forehead Wrinkles:An Underestimated Entity?Antonino Di Pietro a Bianca Maria…Continue

Tags: Botox, FFA

Trying a new approach with CBD oil...

Started by Robin. Last reply by anettemandell Apr 20, 2023. 31 Replies

Hello All, I am venturing into new territory. It just dawned on me that a good experiment would be to try a medical grade CBD oil tincture on my hairline and see if it affects the redness. CBD is the nonpsychoactive part of marijuana that is being…Continue

Man with FFA. New member.

Started by Thomas. Last reply by Thomas Nov 23, 2022. 27 Replies

Hello,Thought I’d share my experience, as one of the few men with FFA, in the hope that it will be useful to others. It’s possible that the condition progresses and responds differently in men. I’m 40, live in London and otherwise healthy.I first…Continue

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Comment by diana on September 7, 2017 at 4:49pm

yes i also have ridges on my thumbs.. not too bad but they are there. and been for maybe close to 10 yrs.  i think they have improved over the past couple of years with supplements etc. like biotin, collagen peptides by vital protein.  hoping they help my hair loss more than my nails!  although my loss is slowed to i believe normal since i removed gluten, dairy and sugar although i do have either of these at times, very imfrequently but we all have to have sugar...please & thank you

Comment by Liz on September 7, 2017 at 3:41pm

Comment by Liz on September 7, 2017 at 3:37pm
I have very ridged nails and one that splits length ways which is a pain x
Comment by Airam-FFA on September 7, 2017 at 3:00pm
I developed ridges on my finger nails with a more prominent ridge on the fourth finger of my right hand and another on my little left finger. I originally thought the ridges were from having Shellac nail polish for a few years. I now think the ridges have more to do with the FFA as my nails have been Shellac free for over two years but the ridges have remained :(
xOx
Comment by Minter on September 7, 2017 at 8:21am

DW, I also have had a ridge in my thumbnail for at least the last ten years, I hate it as my nail is always tearing really low at the ridge and it hurts :-(

Nina Jones, lucky you on going off to Corfu and having a hairdresser daughter! Enjoy!  

Comment by Nina Jones on September 7, 2017 at 3:52am

Yes, I have indentations in a couple of nails, that began before the hair loss became noticeable - hence why I get them done each week to make them look pretty. Love your attitude too Minter (and the name) - I'm off to Corfu tomorrow and yesterday I was in that salon getting my hair all glammed up - highlights etc - and I take real care of it now (fortunately my daughter is a hairdresser so I get the top end stuff all for free!!!) and I reckon it looks better than it's ever done, like you said. It's long and bouncy and I can still flick it back. Funny, I never really noticed my arms or legs until recently, when I started reading this forum, and like everyone else it seems, hairs there are minimal (still, saves me on the leg waxing, so every cloud has its silver lining).      

Comment by illustr8r on September 6, 2017 at 11:37pm
DW- I have thumb ridges running down both nails but no out of the ordinary indentations. My other nails are fine. Interesting. I expect if I asked my dr about it I'd get the usual, "as we age" speech and she wouldn't think it was tied to FFA!
Comment by DW on September 6, 2017 at 11:09pm
Is anyone with LPP developing any symptoms that have affected their fingernails? When I saw Dr. Donovan in October 2015, he checked my fingernails to see if they had been "affected" (he didn't mention in what way). I am noticing now that my thumb nails have developed multiple ridges running the length of them (from the tip to the nail bed) and strangely they both have a more prominent indentation that has developed about a quarter of the way in from the tip of the nail running from side to side across the nail as well.
Comment by Minter on September 3, 2017 at 8:07am

Right on Nina Jones! Love your attitude & strength and it sounds like you have yourself a fabulous life!

Yes and yes I agree completely, creativity is key for dealing with FFA- I have my powders and potions that I use every morning to deal with my hair and then that is that, I go on with my day as there is no way I am going to let my crappy hair beat me down.  I had bad hair days when I had more hair and I will still have bad hair days with less hair- but actually now that this has happened I am paying more attention to my hair and taking better care of it then ever before, so ironically, it looks better now then it ever did.  

I keep reading about stress being a trigger and I had no stress, no specific stressful event, this just happened over time- one day I noticed I had no hair on my arms and then I noticed I had no hair in front of my ears.  I don't really have any autoimmune issues that I am aware of, never really used sunscreen a lot, took fairly good care of myself, never to extreme in anything- as my doctor once said to me, I was boringly normal!

The only thing I can point to as to the cause of for me is my mother. She didn't start losing hair until her late 60's but it started for me at around 50.  So that is really the only thing that I have to "blame" for my FFA as I don't have any of the other triggers that I read about here.  Again, the mystery of FFA, why, how, what causes it!

Comment by Nina Jones on September 3, 2017 at 3:45am

Hiya - it does seem also that a lot of us are cursed with autoimmune nonsense- mine is an underactive thyroid gland and that was picked up when I was in my early 40s because of hair loss, not because I was gaining weight as I have always been quite ocd about putting on weight. Thankfully, then, once I started the thyroxine tabs my hair was once again thick and glossy. I was actually in India on a 6 month sabbatical with my husband having a whale of a time in 2010, when this wretched condition was first spotted, not in the least bit stressed (although stress is always a factor, whatever the situation, at times). I was having highlights put in my hair by two beautiful Goan girls and they started making comments in their own language about something they were seeing in my hair - I thought it must be nits, or lice (wish it was - easily rectifiable) but no, it was minute bald bits all along the side of my hair line. I tried everything while I was out there, over the counter stuff, but then I got the devastating news when I was back home that it was permanent hair loss, AND progressive...

Seems a lot of us, from what I'm reading below, have spent time really caring about how we look, I'm 62 but my war paint goes on every morning, I love clothes, I look after my weight, eat healthy, have had facial CASI's for about 18 years, get my nails done every week, travel all over the world and off the beaten track, have a very demanding but fulfilling job, kids, grandkids, a great hubby, and am determined this bastard condition will not get the better of me...especially as I am a recovering alcoholic on top of everything else and haven't had a drink or anything else for more than 26 years - no fags, nothing. Jeeze, I live a healthy life!!!

I bet you if we all met  up, we'd all agree we are a fabulous looking bunch. Creativity is the key. Yes, I made a bit of a cockup with my second lot of tattoos that were supposed to look like hair but were nothing like, but after the initial weeping and wailing from me, I'm doing something about it and the laser treatment is working slowly but surely and I'm already planning on getting more done at the end of it. We got to keep smiling girls, and share our stuff, and try out ideas...there really are worst things to have out there, even though it doesn't feel like that at times when we have one of those truly bad hair days, but onwards and upwards, as they say x                        

 

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