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 Liz on December 3, 2013 at 5:10pm

Hi. Tomorrow I have an appointment with Dr T at Guys hospital. He has asked to see me, my mum (who also has FFA) and my son. I'll let you all know how we get on.

Jess I took the oral steroid prednisolone. It's difficult to say if it made any difference because there is no particular pattern to this condition but it did make my skin lovely which led me to believe that it probably minimizes any inflammation in/on the body.

xx

Comment by Brooke on December 3, 2013 at 4:44pm

I'm not sure how to reply to Deb directly about the FFA fact sheet you have developed but I would appreciate a copy.  Thanks very much for putting it together, Brooke (brooke@peak.org)

Comment by jess on December 3, 2013 at 3:41pm

has anyone that tried the oral steroid prednisolone felt that it made a difference?

 

Comment by ET on December 3, 2013 at 2:41pm

Hey All, I'm wondering if anyone knows of a doctor in the Denver area that specializes in FFA.  My sister who lives in Portland was diagnosed 2 years ago.  I think I have FFA as well as my hair is receding.  

Comment by Maddy, California, U.S. on December 3, 2013 at 2:35pm

Debs, I would also love to see your fact sheet! I think I sent you a friend request...or at least I tried :). I have a call set up with Dr. T on Thursday...so hopefully can be part of the research! Thank you!

Comment by Jules UK on December 3, 2013 at 2:31pm
Debs, it's a fantastic idea to create a fact sheet. Would you email me a copy, please? I've managed to opt out of email alerts somehow. I thought it had gone quiet! New eyebrows this week, at last. X
Comment by Catherine on December 3, 2013 at 1:46pm

Hi Rita, Of course, I will be most happy to. I really have tried so many different options and seen numerous doctors, some of which have published a lot on LPP (I have two forms of LPP: FFA as well as the 'classic' LPP elsewhere on my head; my FFA is most obvious and active). It has been such a journey. I am travelling at the moment but will write a detailed account of all the treatments I have tried, length of treatment etc.,  as soon as I am back home in London in a few weeks. It is not a happy ending unfortunately as nothing so far has seemed to work...

Comment by Rita - Canada on December 3, 2013 at 1:24pm

Catherine, I for one, would be very interested in the treatments you've tried and length of time you tried each as well as the country you received the prescription from.  I am sure we would all very much appreciate this information, please and thanks.

Comment by Catherine on December 3, 2013 at 1:11pm

Debs, I would love your fact sheet too (have sent you a friend request). Thank you so much! I have tried so many different treatments over the last year, and seen many doctors in the States, the UK and France. If useful for you all, I will happily summarize everything I have tried...

Comment by Kath UK on December 3, 2013 at 11:20am

Debs - great idea about the fact sheet.  I'd very much like one, please.  Have sent you a friend request.

 

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