Frontal Fibrosing Alopecia

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Frontal Fibrosing Alopecia

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

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

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

Tags: Botox, FFA

Trying a new approach with CBD oil...

Started by Robin. Last reply by anettemandell Apr 20, 2023. 31 Replies

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

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

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Comment by PamW San Diego, CA, USA on April 28, 2013 at 6:52pm
Judy, check your email. I contacted you.
Comment by Debs on April 28, 2013 at 6:40pm
Rebecca

Dr Harries has seen women with hair ranging between 2cm and 8cm. You can't tell how much you will lose until it stops.
Comment by Liz on April 28, 2013 at 3:10pm

Hi. Hope everyone is having a good weekend.
I've taken myself off both the Doxycycline and Regaine. Both were making me feel ill. Perhaps I have a low tolerance for medication but the Doxycycline was making me feel stressed, giving me ear problems and neverending thrush and the Regaine was making my eyes burn. I'm now dosing myself up on Piriton to try and help. I have started to feel better the past 2 days thankfully.
I'm losing more hair and feeling very sorry for myself. My son said that it looks like a scar where the hair has gone :o(
Has anyone else who sees Dr Harries had thier appointments changed? I've had my June appointment changed 4 times so far. I'm wary of booking train tickets incase it gets changed again.
xx

Comment by Simone NJ USA on April 27, 2013 at 9:42pm
Hi Celia:

Wondering if you could ask Dr. Harries if he were to do any DNA testing on mother/daughter with FFA what would he look for and what sort of guidelines would a doctor follow or what to look for really to pinpont when doing this test as I asked my Derm if it could done, but she said it's such an unknown disease that doctors would not know what to look for?? Also, how soon does he plan on conducting such a test...


Thanks...I would really appreciate it...
Comment by Judy on April 27, 2013 at 8:01pm

Hi ladies. I just finished reading the week's posts. Thank you
Pam and AC for the excellent websites. I will read them tonight.
Interesting. I have been taking strong doses of NSAIDS (anti-imflamatories), for many years as have bad Osteoarthritis - this is not an autoimmune disease like Rhuematoid. But that is why I take any anti-inflamatories that I hear about. The Tumeric I started only 3 months ago - but I have NOT had any inflamation with FFA since then. I also take Ginger and a small amount of some of the other herbs mentioned, plus probiotics.
I recently changed family doctor for various reasons, but because of that, I have learned about several problems I have that I would have NEVER guessed - wonder if they have any relation to FFA? I will mention them in case they may be helpful to anyone. One is severe sleep apenea and one is low cholestrol (way below the minimum) - both of these are fixable but I wonder if they could have any relationship to FFA?
Once I asked my dermatologist why the severeness of my FFA seemed to be getting so much better. I wonder if it is my NSAIDS? Is anyone else taking them? They perscribe them for pain (wihich reduces inflamation in the joints). Curious but I don't know enough to make any assumptions.
Pam what do you think? Also, please check out my April 15 posting for new email address so we can arrange a get-together.

Comment by Celia on April 27, 2013 at 6:24pm

Hello all - I'm seeing Dr Harries next Thursday 2nd May - if you have any questions - I would be happy to put them to him. Hope all's well !

Comment by Simone NJ USA on April 27, 2013 at 7:59am
Thanks For the article, Pam!!
Comment by Chrisy, MA USA on April 27, 2013 at 2:17am
Thank you, Simone!
Comment by Debs on April 26, 2013 at 8:43pm
Pam - wow fab article, I just read it. Very interesting.
Comment by PamW San Diego, CA, USA on April 26, 2013 at 7:28pm
Here is an easy to understand article that explains the link between auto immune disease and inflammation. Thought I would pass it along.

http://www.todaysdietitian.com/newarchives/110211p36.shtml
 

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