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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: 601
Latest Activity: Jul 8, 2023
Discussion Forum
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
Dermatologists who specialize in alopecia?
Started by NorthCarolinaMama. Last reply by tcasal Nov 2, 2022. 1 Reply 0 Likes
Hope everyone is having a great weekend!I'm a freelance writer working on a story about alopecia. I need to find a dermatologist at major hospital or teaching institution to interview -- any suggestions?I've already reached to physicians at Duke,…Continue
Comment Wall
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Comment by MairiM on December 2, 2012 at 5:46pm
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The consultant I saw is called Dr Colin Fleming at Fernbrae Hospital, Dundee. He didn't say that he had a particular interest, but he did say that he had seen a number of cases of FFA.
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Comment by PamW San Diego, CA, USA on December 2, 2012 at 11:08am
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Celia, two things. One Plaquenil does help some people. If it didn't doctors would not prescribe it. It takes 3 to 4 months for it to get into your bloodstream so the sooner you get on it, the better you will be. Two, I have scar on my eyebrow from a fall I took as a kid. The makeup artist went right over it a few times so that it would match the other brow. You will feel so much better with eyebrows.
Did Dr. Harries mention Actos? Why does he prefer Protopic? I wonder if we can get that in the US?
I wish I knew a wig expert. I think if we knew that we can still look good wearing hair, we would all calm down. Hugs to you, Celia. You are an inspiration.
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Comment by Liz on December 2, 2012 at 10:02am
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Hi Sandy. I have a good knitting pattern for ones that are wide at the front and thin at the back. If you google etsy you can buy either the patterns or finished items. I have also made some material ones which work well :o)
Hi Celia. Thanks for the feedback on your appointment with Dr Harries. It seems like he is doing all he can and he certainly sounds more thorough than my doctor. I guess that as more and more people are diagnosed with it it will become more known and researched. I would like to get it talked about on tv and in magazines but Im not sure how. I contacted embaressing bodies but the answerphone told me that they dont need anyone else until next year. Do you or anyone else have any ideas?
xx
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Comment by Debs on December 2, 2012 at 6:32am
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Celia, thanks so much for passing on this info. At least we all know what the options are for us and we are as best informed as the dermatologists themselves. I am very pleased for you that Dr Harries gave you some treatment on the day. Both you and Pam have now mentioned the anti-malarial meds as a treatment. I will look into that too. Thanks again, enjoy your weekend. XX
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Good morning! I wondered whether anyone has tried protopic cream. Since Dermovate isn't helping any more, I've been given this to try. I'm. Bit worried that there's a warning with it about skin cancer, which I've had twice, and that you can't drink alcohol! No wine over Christmas....., I just can't remember if anyone's mentioned it before. I agree that it's puzzling that there's no news from celia, but I'm sure she'll be in touch when she's ready to talk. Hope she's ok. X
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Comment by Anabela on December 1, 2012 at 5:41pm
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Good evening to all.
One of the best Portuguese dermatologist that I consulted in Oporto, told me that the implant is not possible, since the skin is healed, therefore, has no pores to breathe. He gave me an example, "it's like trying to plant trees on cement." We can only hope that the hair stop falling.
So, let's enjoy the weekend and relax our mind and be happy!!!
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Pam - I haven't had any hair loss with the Minoxidyl. I've been making partings all over the top of my head and applying it. My thinking was that I need this hair to be in good condition to cover up the gapsin front! This may be totally wrong, but there's no clear guidance from the medics. The minoxidyl was prescribed by my consultant - we are lucky that we get prescriptions free in Scotland.
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Pam, I was thinking the same as you... Celia may just be having some time to relax after her consultation on Thursday, I certainly hope that she did not have any upsetting prognosis. xx
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Yes, I am concerned that we have not heard from Celia. I hope she is ok.
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Hello Pam, thanks very much for posting this info for us all to share. It will be interesting to compare the advice Celia is given by Dr Harries. I hope you are able to relax a bit now and enjoy your weekend. xx
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