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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 illustr8r on November 24, 2018 at 2:59pm
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I just saw this article posted on the LPP Facebook forum. A glimmer of hope, maybe? For some anyway. There seems to be no predicting how each of us will respond to said drug-if at all. Even though I’ve chosen the drug free route (except for Clobetasol) I still sorta apprehensively consider trying something if it’s kidney friendly and has shown results.
I remember some time ago a commenter here said to get on finasteride and/or dutasteride. It had helped her a lot. Anyway...read on:
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Comment by Donna on November 21, 2018 at 12:36am
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Rose, I just saw your post. The clobestatol I use is a solution. It’s not a lotion or a cream. It’s clear & like water & I only need to use a little bit along hairline.
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I've seen the TatBrow also and thought, hmmmmm, I wonder.....??? Since because of stupid FFA my lovely microblading lines have all blurred together :-(
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@AnnieMay My brows have faded too. I use 3 pencils (light brown top, dark brown bottom, fill in gap between with powder, draw individual hairs with brown/black pencil) and brow powder to make them appear normal now. Oof! Too much! I’m waiting till spring to get my microblading done again.
I’ll give this TatBrow a try and let you know. :)
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I've seen the ads for TatBrow and would love to hear your thoughts. My eyebrows have faded so much but now it's too close to the holidays to get them redone. I literally couldn't leave my house for 10 days last time I had them done. But feeling so self conscious now. Ugh
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Has anyone tried TatBrow, a microblading pen tool for eyebrows? I just saw an ad for it on Instagram. Looks interesting. You can draw on individual hairs. It’s waterproof and won’t wear off by the end of the day like powder and pencil.
i think I’ll try it. Similar products on Amazon from $7-12.
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I wanted to give an update on where I am at with my FFA and the use of cannabis. I tried to enter it in the comment area here but I had too many words. I have attached in a pdf. I attached the handouts here as well as in the pdf. I am not sure they will be available through the pdf. Let me know if the attachments are not available
Epigenetic%20control%20of%20skin%20differentiation%20genes%20by%20p...
human-endocannabinoid-system-e1500759390507.png.pdf
SMJ%20CONSULTING%20TERPENE%20PROFILES.pdf
Terpenes%20and%20the%20_Entourage%20Effect_.pdf
The%20endocannabinoid%20system%20of%20the%20skin%20in%20health%20an...
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@HBW I think it’s related because of the red blotchiness just under the surface that I see. I get these breakouts mostly where my pitted lumpy skin is. The skin form of lichen planus maybe. They come and go-similar as good/bad hair phases.
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Comment by Halfbakedwho on November 5, 2018 at 4:04pm
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Illust8r, is the skin problem related to FFA? I can’t remember what you’d said about this before...
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The white band of shiny white skin that marks my hair loss is too smooth, tight and strangely numb. Sometimes I still get big peaking flakes along my still there hairline. This happens most frequently if I don’t towel dry my hair well and my hair/scalp dries out before I blow dry it.
Right now, my skin is most worrisome. It’s very pitted and I feel like I need heavier make up to smooth it over. I’m also get red half inch long and almost as wide red blotches on my lower cheeks and chin. They flake around the edges and eventually turn into brown spots.
Every day I look in the mirror and wonder how much younger I’d look and feel if I didn’t have this dreadful condition. What’s life like for a normal 54 year old woman?!? *sigh*
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