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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 Simone NJ USA on March 7, 2013 at 3:28pm
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Hi Everyone:
Debs..you look like someone from the roaring 20's!!! Nice look!!! Is this one of the hairpieces you recommended?
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Comment by Kath UK on March 7, 2013 at 12:44pm
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Debs - you look really great in the curly wig. I'm sending for a Henri Margu fringe thanks to your reccomendation. Hope it is as successful as your one.
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Debs, you look absolutely fantastic! You're sounding so confident and positive. Curls suit you!
Susanne, I have been careful about eating sensibly and thought I was actually eating better..... But just have that anaemic feeling. And I really miss baking. I've been gluten free for about a month and paleo for 2 weeks and it hasn't made a difference yet. I don't think I have the staying power if it's not helping...
Thanks for the link to TED. I missed it before.
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Comment by Susanne on March 7, 2013 at 9:22am
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Jules - Debs had posted this some time ago. I'll repost it here. http://www.youtube.com/watch?v=lrJom48KQA4
It surprises me a bit to hear that you're so tired from the paleo diet. I have found that if I follow it an eat right, I have plenty of energy, but I've also found it to be so restrictive that now I'm just leaning toward it rather than following it strictly. I've been eating some rice and having some wine. I've come to the conclusion that fanatical obsession with these things just isn't realistic for someone like me. Since I started eating gluten-free a couple of months ago I've seen less inflammation - with occasional flare-ups, but I have no illusions that my diet is going to bring this thing down.
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Comment by Debs on March 7, 2013 at 9:03am
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IMG_1095.JPGOMG just got the first of my 2 Henry Margu wigs, only ordered a couple of days ago, very good service and the website gives us VAT relief. My page band wig should be here in a couple of days. At least I am having a bit of fun from this condition.IMG_1096.JPG
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Susanne, how is your paleo diet going? I feel so tired, I think I'll have to abandon it. Pretty sure I'm eating well and have found some great websites with recipes.I'll give it until the weekend. Ther's no change to my FFA. By the way, what was the TED talk you mentioned? X
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Debs, thank you so much for sharing the TED talk. Pretty amazing.
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Alice I think it is a great idea to use scarves and hats to be comfortable especially if you are experiencing itching. I have some scraves too so I am not always in a wig. Went to the gym earlier, I wear a wide headband that does me very nicely. I don't fancy working out in a wig but some people do manage it I know. If you have a favourite place to get your scarves do let us know, it is nice to have a recommendation. XXX
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Debs, I've seen lots of women of African descent with hairlines similar to FFA. When I asked my derm about them, she said they were likely "traction alopecia", from pulling the hair back too tightly. I'm certainly not brave enough to wear a bun or ponytail, but the 2 things I've always wanted to avoid were wigs and dentures. Fortunately, my teeth are sound and I haven't lost enough hair [yet] to consider a wig. I like to think I will be able to get away with scarves and hats but that remains to be seen. As itchy as my scalp is, I think a wig would drive me crazy.
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Alice, I have looked at your thread, very interesting, I saw a woman in her 60s at a local craft fair last year with the exact same hair loss, she was a very elegant lady and wore her hair up in a bun, I was surprise to be honest that she did not wear a wig to cover the hair loss because it was very noticeable, recession about 3 inches all around the hairline. I instantly knew it was FFA, I was not wearing wigs at that time as I had only lost very little hair and I did consider going up to her and asking about the condition but didn't want to appear rude. I know that most derms think FFA is a modern condition but I think it may have been under-reported in the past and maybe not a common as it is now. Thanks v much for the info. XXX
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