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: 601
Latest Activity: Jul 8, 2023

Discussion Forum

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

Dermatologists who specialize in alopecia?

Started by NorthCarolinaMama. Last reply by tcasal Nov 2, 2022. 1 Reply

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

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Comment by Celia on December 3, 2013 at 7:55am

Thank you Carol for that info - I wasn't aware of some of that but it is good to know that things are beginning to happen !

Comment by Pam on December 3, 2013 at 4:16am

Fact Sheet - yes I would like one please!  Brilliant idea. To give to my local derm as well, also local trichologist and skin/hair clniic. They all say they are seeing more of the condition, and would like more information. I think that the more we make people aware of FFA the better, and the higher the chance of some research being done into why it occurs, and what can be done about it.

Comment by Celia on December 3, 2013 at 3:46am

Brilliant idea, Debs, well done ! x

Comment by Debs on December 3, 2013 at 3:40am

Any new ladies on here??? I have typed up a fact sheet on FFA to save you the time/effort of reading back over our past posts... please send me a 'friend' request so that we can exchange emails and I can send you the fact sheet as an attachment.

Comment by PamW San Diego, CA, USA on December 2, 2013 at 10:42pm

Jess, clobetasol is a topical cream that contains a steroid.  It is a foam that is put on your scalp and it is supposed to reduce the inflammation which is supposed to help with the burning, itching and discomfort in your scalp.

Comment by jess on December 2, 2013 at 4:17pm

sallylwess what is clobetasol?  is it an oral steroid?  I wonder if I should ask my derm for an oral steroid....

Comment by Jean on December 2, 2013 at 2:30pm

I also had an interesting chat with Dr T this afternoon and will be joining his research group.  He said that there was some conflicting research, in that one study involved using mice, who grew hair on man-made minor skin damage.  The second came from sufferers who had hair transplants following FFA.  The procedure caused a flare-up of the condition.  Dr T asked lots of questions around thyroid and HRT issues and feels that a lack of estrogen could possibly be a trigger but it's very early days and he doesn't want to make any assumptions. 

I'll wait for my saliva test.  Great that something's being done!

Best wishes - Jean

Comment by Celia on December 2, 2013 at 1:15pm

Debs - the link you sent had a  letter u in the e mail address you gave for Dr T - that is why it bounced back when it was used by some.

christos.tziotzios@kcl.ac.uk      Just in case anyone hasn't e mailed him yet - this is the address.   It's a difficult surname to write I almost had to do it letter by letter - I asked him the pronunciation - I still couldn't say it !

Thanks Debs for finding him - have you done the test yet ? x

 

 

Comment by sallylwess on December 1, 2013 at 10:10pm

Debs, I did not get the email from you.  I have spoken to Dr. T.  I will be getting a saliva collection kit soon from him.  

Comment by PamW San Diego, CA, USA on December 1, 2013 at 11:57am
Hi, Debs. I got your message and I used your link to email him, but my email bounced. So, I went back to your original post and used that link and I was able to send the email. Have not heard from him . . .
 

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