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Frontal Fibrosing Alopecia
Information
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 14 Likes
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 0 Likes
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
Trying a new approach with CBD oil...
Started by Robin. Last reply by anettemandell Apr 20, 2023. 31 Replies 0 Likes
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 4 Likes
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
Comment Wall
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Comment by DeniseC on October 20, 2016 at 9:24am
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OK. That's fine with me. What about 11.00ish? Coffee somewhere? You suggest.
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No I'm not sure how to do it either. I could do Tuesday but would need to be back home by 4 ish.
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Would make more sense to private message, but I don't know how to do it on this site, and haven't time right now to faff! Do you know?
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Not me - but happy for us all to meet up. Tuesday would suit me I think. You?
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I think Liz also lives in Brighton. I met her and maybe you? A few years ago at Celia's at a lunch time get together.
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That would be really lovely. I'm on half term at the moment as I teach. Any day next week would be possible.
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My daughter lives in Brighton if you would like to meet up at some point? I am happy to do so, as I know what it is like, and I know how difficult the decision is.
Denise
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Thank you Denise, that's real helpful indeed. I'm based in East Sussex so not far from you.
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Oh! I am surprised .... I got an intralace system seven months ago. Yesterday I went back to have a new hair piece fitted (they call it a natural hairline parting or something)- and I am more than happy.
There sre things you have to get used to, and you learn as you go. So when I first had it fitted, the styling was too heavy around my face. My hair is short and it looked wrong. So I had it re-styled. The colour was also a bit out. You couldn't see that in the salon - I had been there all day more or less, and by the time they finished it was dark. Daylight showed it was slightly wrong, so I called and they could not have been better. I went back the next day and they recoloured, including my own hair.
This time I knew exactly what I wanted, so the styling is right and the colour too. It's great.
It's not cheap, but no one knows the hair is not my own, apart from my family and friends, all of whom I told. I can do anything with it with confidence, including (hooray) go out in the wind. And it is easy to maintain - all I do is follow their instructions and use an argon-based conditioner, avoid excessive use of heat (as in straighteners)and use a correct hairbrush so I don't pull the hair out.
I wss told I would need the hair replacing every four months, but I went seven - and it was okay. Still realistic, which for me is the main thing.
The people at the clinic are great - very friendly and very helpful. And going there makes you realise quite how many women have hair loss.
I can't recommend it enough. As I say, not cheap, but for me, really worth it.
Where are you based? I am in Surrey - if you want to meet up and I can show you, that's fine by me.
Denise
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Well I have not been on the group site for ages as my old email address was hacked and I lost all my previous emails and links. Anyway still have the dreaded condition and yesterday had an appointment at Guys to see Dr Bhargava. A very nice and empathetic chap but no information I'd not heard before. Have not been taking anything for 6 months however he has suggested another course of Hydroxychloroquine and topical lotions. I'm feeling very confused but given that I'm now at the point where the interlace system is for me maybe I should try again with the medication. Liz I know you have had the interlace but some of the online reviews make sad reading. Would like to hear from anyone with their views on Lucinda Ellery Consultancy. All the best to you all Claire.
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