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 Classical Anne in NC mountains on October 7, 2014 at 3:02pm

Hi Ladies, I have had the same issues with my remaining hair -- it is frizzy, limp, and totally uncooperative!  It is for that reason, rather than how far it has receded, that I now usually wear a wig to meetings and gatherings.  [Speaking of which, I hope your group meet is wonderful again!]

Celia, I have found that some form of Retin-A cream, which I get in samples from my derm, fills in the injection dent rather miraculously.  If I stop using it for about a week, it does tend to show up again.  But so easy to erase it with the cream.  And, of course, I'm still receiving the injections, so can't expect it to fill in naturally and totally until some time [perhaps a couple years] after I stop the injections.  But as I've said before, my little dent is barely visible to anyone other than my husband or derm, and is so easily covered with bangs.  I hope you can 'erase' yours soon!

Best to all,

Anne

Comment by Liz on October 7, 2014 at 2:12pm

Hi Terry. My hair is now frizzy and unmanageable however I was given some good advice by a lady with FFA and it worked for me. I told her how I changed to natural unperformed products and barely touched it through fear of it falling out. She suggested that maybe I was been too kind to it. So now I don't take any notice of what make my shampoo/conditioner is however I always use the conditioner that you have to leave on for 5 plus minutes. I also dry with one of those round brushes with soft bristles all round the outside. It's done the trick. My hair now drys flat and is not breaking off as much x

Comment by Celia on October 7, 2014 at 1:45pm

Hi Terry - I have the same problem - it is as though the hair is much finer and tends to lie flat.  Due to the intra lesional injections, I have been left with a ridge at my current hairline and the hair seems to annoyingly follow that contour - I do wish I had never had those injections.  I use a volumising shampoo called Herbal Essences uplifting volume then a Kerastase conditioner topped off (!) with KMS California root boosting spray before blow drying what is left ! I swear I come back with less hair every time I go to the hairdressers - all that blow drying and pulling at it whilst that is being done - I don't think is so good.  I am going to ask my hairdresser to just dry it using her fingers then literally just finish it off gently with a brush - I take my own brush as the spiky hairdressers ones hurt my scalp.  I do sound precious don't I ? !

Sorry you can't make the get together - for those who have missed the info - it is on the 16th October.

Norfolk Girl - a Skype chat sounds good. Sorry you can't make it too. x

Comment by Norfolk Girl on October 7, 2014 at 3:17am
Hi C, I really can't make it as I have an old and needy( and lovely!) dog and it is a long journey. I wondered if I might meet you all via a Skype call for 10-15 mins?
Comment by Celia on September 30, 2014 at 2:43pm

Ladies - so far it looks like we have Deb, Pam, Catherine, Moira, Meme and hopefully Jules.  Norfolk Girl - if you change your mind please let me know - it would be lovely to meet you !  If I have missed anybody out, do shout ! x

Comment by Celia on September 30, 2014 at 10:57am

I will e mail Jules about the dates for our get together - she is still on holiday I think and missing this glorious weather we have here !!! I will keep posting on here and sorry if I appear to keep repeating as several ladies are logging on to this site intermittently.  So looking forward to seeing people !

Catherine has said the 16th is best for her - I will see if that's OK for Debs too x

Comment by Pam on September 30, 2014 at 3:55am

Any of the dates would suit me - Oct 15th, 16th or 17th. I`m easy! Just let me know what suits you best, so that I can book it in before other things crop up!

 

Cheers,

Pam

Comment by Catherine on September 26, 2014 at 9:44am

Hi C,

The 16th would work best for me, if that suits you all too?

Thanks so much,

Catherine 

Comment by Meme on September 26, 2014 at 5:29am

Hello C

Sorry, meant to write yesterday. Our trip has had to be cancelled so I can now make any of the dates.   Thank you C.

meme

Comment by Celia on September 25, 2014 at 6:07am

Meme - have added the15th Oct to list of possible dates - any good for you ?

 

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