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 Ann on January 19, 2014 at 12:44pm

Hello,  I know there has been many comments regarding various drugs that are taken for LPP/FFA.  I have been taking 200 mg of hydroxychloroquine for a few months.  My derm wanted to increase it to the therapeutic dose, 400 mg/day.  My GP was concerned because I have only one kidney.  My derm then recommended doxycycline, but I'm concerned about taking an antibiotic long term.   Has anyone come across this "complication" to taking meds?   I don't know what to do. 

Comment by Celia on January 19, 2014 at 7:40am

Liz - I never realised you have friends with FFA.  I hope that you all support each other well - I presume they are local to you ?   I guess when any new sufferers google the problem - the first face they see on this forum is MINE ! The reason being that I set up this group, thanks to Alopecia World.  There is no way that I know of to change it.  However my stance has always been to tell nobody what my problem is.  So - whilst friends may notice my hair is different - my plan is to start with thin wigs to match - eventually - and then - who knows. I think we have all learnt a lot from each other here and that must surely outweigh the downside that others may take a peek - BUT - only if you tell them.  Your friends with FFA will surely wish to join this forum and take advantage of the amount of knowledge here.  I am about to start with a new dermatologist.  He won't have the magic potion - but I hope to start over. x

Comment by Jean on January 19, 2014 at 6:09am

Just back from a fantastic holiday over Christmas and the New Year in Jamaica.  No real difference to the FFA I'm afraid (in fact I think my hair is getting thinner) but I'm seeing my specialist on Tuesday - not that she'll have anything else to offer!  Sorry to be a pain, Debs but please can you let me have your link for the terrific fact-sheet you put together.  It will be useful to show my derm what other's are trying.  Many thanks  Jean x

Comment by Annie on January 16, 2014 at 4:46pm

Thanks, MJ. 

Comment by MJ on January 16, 2014 at 4:44pm
Annie, Yes. She said I can use color over all but the frontal area affected by ffa. She said highlights are ok in the ffa area because they are wrapped in foil and do not get on the scalp.
MJ
Comment by Annie on January 16, 2014 at 10:34am

MJ, I have a question regarding your doctor's advice about coloring hair.  Does she recommend using foil highlights with no additional color in the areas affected by ffa?  My hairdresser does a weave with foil highlights, then uses a color over my entire head followed by a toner at the end to make the highlights appear more natural. 

Comment by Rita - Canada on January 13, 2014 at 8:20pm

Debs, I may be wrong but I believe you are using Tumeric essential oil and Rogaine 5% foam and if so, which do you apply first? 

Comment by jess on January 13, 2014 at 5:05pm
Has anyone ever experienced regrowth in areas where they have lost hair? Regrowth that has remained?
Comment by Liz on January 13, 2014 at 3:29pm

Celia. Many of my friends have FFA but that doesn't mean that I want them reading my personal posts on this site. Also if our photographs are out there on the internet then we have no control over how they are used x

Comment by Celia on January 13, 2014 at 3:24pm

Liz, I have known for a long time how accessible the forum is. Initially I found it scary too and a very long time ago - I made comment on that.  I haven't told any people in the UK about my FFA.  If I do then it will be because I totally trust them not to make FFA the way I am defined.  But I do think that when people/friends are told what the problem is - there is no going back.  If you've shared your problem with friends, then you've done so because you trust them.  Nobody is just going to randomly research FFA and find you/us.  x

 

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