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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 CJ- Christine from Ottawa Canada on February 5, 2013 at 10:55pm
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Hi all, I just read the german article ( I`m german by background) and it is depressing. It sounds as though, based on this one case, where they tried everything including cyclosporine and thalidomide, the disease just carried on. There was a reference to our own Dr. Donovan`s research where there was some progress made with eyebrows via steroid injections.
I`m going to the American Academy of Dermatology meeting next month and hope that there will be some sessions there I can attend and see if there is anything new.... and more hopeful
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Comment by PamW San Diego, CA, USA on February 5, 2013 at 8:41pm
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Good luck, Heidi! Could you ask about the anti-fungal issue that was raised the other day? one of the ladies is being prescribed an anti fungal med. Never heard of that before. Tell the doc the whole group from continent to continent says thanks!
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Comment by Heidi Short UK on February 5, 2013 at 1:10pm
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Hi everyone I'm glad your day went well Debs, You look fab in your picture!I'm going to see my derm tomorrow is there any questions you would like me to ask. I think I will ask about diet, also the length of time I can safely be on my medications and if she thinks it is heriditary, oh and is it auto amune or not! Any other questions let me know.
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Comment by Liz on February 5, 2013 at 10:01am
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Ok. Thank you :o) xx
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Comment by Jules UK on February 5, 2013 at 6:09am
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Hi Liz. I saw Dr Harries himself. I think it was Celia who said that he likes to see FFA ladies because it's a particular interest of his. To be honest, he didn't say anything I hadn't already learnt on this forum but it's good to be "in the loop" if any research goes ahead.
Can I ask if anyone who's progressed to wigs is able to sleep in them? X
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Morning :o) I have an appointment with Dr Harries 'or one of his team' on 15th March. I am concerned that I might not get to see Dr Harries so I phoned the appointment line and have been told that I will get to see him unless there is an emergancy elsewhere. Has everyone who had an appointment with him managed to see him? Is there anything else I can do in advance so that I can get to see him?
Liz
xx
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Comment by PJ - MN, USA on February 2, 2013 at 12:54am
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Those of you that did Dr Harries survey/study, when will you hear back? Is it possible to share any of the questions with the rest of the group to give us somethings to think about and ask our own Dr's? I know someone mentioned there was a question on how much time spent in front of a computer.
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Debs, I am so glad that your first day went well. I felt your anxiety. Everything should be easier and easier for you from here on out! I think you have the perfect face for a wig. I think I would look silly.
Rebecca, prednisone has side effects, too. I actually think Plaquenil is safer to take. Actos can be dangerous, if given in high doses and for a long duration of time. I take the minimal amount and will only take it for a few months.
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Comment by Susanne on February 1, 2013 at 3:27pm
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The more I read here, the more I understand that none of these dermatologists have any answers. Rebecca, where are you in Germany? I'm originally from the south near Stuttgart but spent last summer working in Berlin. I teach German here in the States.
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Comment by Debs on February 1, 2013 at 2:03pm
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Rebecca, I know from your previous posts your are having steriod injections, is your dermatologist in Berlin giving you any of the drugs that Dr Harries in the UK is using to treat FFA - doxycline or planquenil ? These 2 dermatologists are both seeing lots of ladies with FFA so I am curious if they are using the same treatment regimes.
Well, my first day at work in a wig went without incidence, a few people commented that I had a new hair style and said it look nice, I wore a short chin length bob wig that is smart and very understated, I feel like a huge weight has been lifted off my shoulders now I have got that over and done with. Have a lovely weekend everyone. XXX
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