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 Wyobalance on February 23, 2017 at 10:46pm

Claire, it sounds like you have more hair than was natural for you.  Can Lucinda Ellery thin your piece a bit.  Would it be a good idea to take a picture of what you looked like prior to hair loss to your consultation?

Comment by Minter on February 23, 2017 at 10:15pm

Sally, I'm not on Facebook- but it sounds like a good group!

Claire Julia, I feel so bad for you that you aren't so very happy with your hair, I thought about you while I was at  the consultation today, I hope you will get more comfortable with your hair soon, it is such a big undertaking, both emotionally & financially  and then to not be pleased at the end, that is hard. 

 I do agree with you though , the staff is superb! Very patient & professional with all of my questions and concerns. I am fairly certain I am going to do it- on the train back home today I was having a good talking with myself (in my head, not out loud haha)! about it and yes, it is a LOT of money, but I started thinking, what if I was spending the same amount on breast implants, or a nose job or a facelift, this is quite similar really, I guess. 

What it gets right down to, is that I just want to look like me again and stop being self conscious about my hair, which in turn, makes me self conscious about my face and my looks and all of me in general and it seems that this might be the only way that I can start feeling myself again.

Airam, I think you will also be impressed by the L.E. team and the interlace system, I had so many, many questions and then thought of more that I hadn't thought of before while I was there and they were all answered and I never felt rushed at all and they showed me the systems and how it would look on me, obviously not cut or colored or anything at this point, but it was enough that I could get a very good, clear idea of what it would like.  

Comment by sallylwess on February 23, 2017 at 2:35pm

Are any of you on Facebook?  The site I use LPP - Let's Put Out The Fire.  It is also such a support.

Comment by Airam-FFA on February 23, 2017 at 12:01pm
I have an initial consultation with Lucinda Ellery next Thursday. How did you get on today, Minter?

xOx
Comment by Claire Julia on February 23, 2017 at 10:53am
It's the same kind of itch really. I do think the hair has calmed down a it but I still feel very self conscious. I teach in a Private School and wish I had had it done at Easter so that the difference want not as dramatic. I am trying to be positive but in truth I feel really low. I thought the interlace would make me feel good but I just resent it being there. I washed my hair for the first time on Tuesday and found the process very distressing. Removing the glue was a real challenge as was putting the tape back on. It's still not properly in place.anyway sorry for being slightly negative I am sure I will feel better as the days progress and true fully there's not a lot I can do about it now. I hope your consultation goes well.
Comment by Minter on February 23, 2017 at 8:16am

Interesting, do you think your head/scalp is more itchy or a different itchy ;-/ then before? As far as having too much hair, has it "calmed down" since washing it? I'm getting on the train in a couple of hours to go for my consultation with L.E.'s today, so I am very curious and very much wondering what is in store for my own hair, what they think will look best etc..... 

Comment by Claire Julia on February 20, 2017 at 2:34pm
In reply to Minter and Lo, here goes. Yes it is tapped at the front. I've not done it yet myself but plan to wash my hair tomorrow so I will report back then. It does itch a bit but then my hair also itched before the system was fitted. They pull your own hair through a net like system and then attach the hair to that. So even people with very fine hair will be able to have it done. The people at LE were very thoughtful and attentive. However I feel I have more hair added than I actually needed. That's why I feel a bit self conscious as my hair looks dramatically different. It is becoming more comfortable by the day or maybe I am just getting used to it.
Comment by CurlyK on February 19, 2017 at 8:37pm
February 28 is Rare Disease Day. Is anyone doing anything special to recognize this day?
Comment by Lo on February 19, 2017 at 5:58pm
Claire Julia... is it taped in the front? I'm curious how it "attaches" if there isn't enough hair in the front/top. Thanks! And I hope you get used to the system so I! I'm sure it looks absolutely lovely. I'd love to see pics but totally understand if you don't want to share.
Comment by Minter on February 19, 2017 at 2:03pm

Claire Julia, Thanks for sharing- I bet it will take some time to get used to having this system, I hope it will be sooner then later for you! How was it getting it done? So how does it feel? Is it itchy or anything? What was it like to wash your hair and dry/style it? Sorry for all the questions- I am actually going this week to L. E.'s and am full of questions about it all!

 

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