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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 Kath UK on March 25, 2013 at 6:22pm
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Rebecca, that was very interesting about your specialist in Berlin saying he reckoned he got a 50% success rate with plaquenil. My dermatologist didn't give me any indication of success rate, she just said it would help the inflamation so it's good to get some idea of the possibility of success, even if it is only one doctor's opinion.
It's worrying that your local dermatologist may have given you the steroid shots in what was apparently the wrong place because as a patient you have to trust that your doctor is doing the right thing for you.
I hope your next lot of steroid injections work for you.
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Comment by Simone NJ USA on March 25, 2013 at 6:09pm
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Thank you Rebecca for sharing..hope your forehead heals very soon...xx
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Comment by Heidi Short UK on March 25, 2013 at 12:47pm
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Hi everyone, you have all been so busy its hard to keep up with all the conversations!
Sandy i have registered to the survey, I don't know if they will take me as I'm in the uk, but I'm sure my doctors will confirm the diagnosis!
Debs could I complete one of Dr Harries surveys as I'm not registered with him although I have had contact with him?
Its good to know there is some interest in this disease!
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Comment by PJ - MN, USA on March 24, 2013 at 4:47pm
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You can go under the settings of your profile and add on your location after your name, then save your changes. Then you don't need to type it in each time.
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Hi Celia:
I live in New Jersey, USA
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Comment by Liz on March 24, 2013 at 1:02pm
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Brighton Uk :o) xx
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Comment by PamW San Diego, CA, USA on March 24, 2013 at 1:01pm
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San Diego, CA.
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Thank you for posting the link to the FFA study in NC. I asked my derm for a referral there on Friday, before I knew about the study, and just filled out the participation form online. Will keep you all posted on results.
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Thanks for the info, AC!! Hope you make the right decisions regarding treatment. It's a hard decision considering there are no proven results...I, myself have just decided to try treatment after many, many months of resisting. It was not an easy one and it is comforting there are more doctors willing to do research for FFA...we all pray for a solution one day soon...
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Comment by Debs on March 24, 2013 at 3:34am
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It is at least heartening to know that there are several research studies happening on FFA. With this group having members in several countries we are well placed to learn of any new developments too.
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