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 Rachel218 on August 31, 2015 at 7:18am
I am still struggling with Rogaine.! It's going on month 4 now and my hair has thinned tremendously on the top . I still continue to use it daily as I am hopeful I am starting to see hairs sprouting up but not everywhere. Has anyone else gone through this where it gets much worse before getting better with Rogaine? I'm getting discouraged. :(. Thanks in advance for any insight
Comment by Kat on August 31, 2015 at 12:46am
To Linda from Cincy, I have been on bio identical HRT for several year now and was diagnosed in June with FFA. I wondered if taking the hormones caused it but research says there is no link.
Comment by Linda from Cincy on August 30, 2015 at 8:31pm

LSE raises a very good point since this condition is most likely connected to hormone imbalances, and that is whether hormone replacement therapy has helped anyone.  Or did FFA happen to you even though you were getting hormone replacement therapy.  Specifically I'd be interested in anyone who took (or is taking)  bioidentical hormones.  Because I don't think synthetic hormones really do the trick and have actually been proven to cause more problems than they solve.

Comment by Sad in chicago on August 30, 2015 at 12:54pm

Thank you Classical Anne from Sad in Chicago.  I had a birthday yesterday, am not age 68.  Have been dealing with FFA for over three years now and wearing head topper clip ins for two.  It is difficult at best and I cannot imagine myself when I am REALLY old and not working with only retirement funds and having limited capability of caring for myself and my appearance the way I do now.  Having said that, no matter what time of your life this happens, it is not life threatening, no one got sick, no one died. Everyone can always figure out a way to look ok given all the options out there, and believe me if I were young and pretty still, I would definitely shave my head and still be me.  Having also been a breast cancer survivor there is no doubt you learn what is important and how to maintain perspective.  Little Sad Eyes:  I am sure that with some time and gaining some perspective of your own, you will come to grips with this and make a perfectly wonderful, healthy life and future for yourself.  Best wishes to you.

Comment by Classical Anne in NC mountains on August 29, 2015 at 10:39am

Little Sad Eyes, I am deeply sorry for all that you are going through.  And I truly understand that at 22 it must seem like your young life is nearly over before it began.  There is really no way to help you see the future the way that someone my age sees it.  But I wish that you could believe me when I say that there are so many good things still waiting to happen.  I have studied your photos, and you are a truly beautiful young woman -- long hair, shaved hair, no hair.  There is such potential for a very happy and fulfilling future.  I know how sad it is to think of losing so much of your lovely hair.  But if it comes to it, I think you'd be stunning in any kind of wig, and you could have fun experimenting with all sorts of styles and colors. And I'd say there's a far better chance of a medical cure in your lifetime than in mine -- you might not be dependent on 'artificial' hair at all.  I remember 22 fondly, when I had long and gloriously thick hair, so I honestly do feel for you.  And even at 64, I felt the diagnosis as a huge emotional blow.  It took many months to come to terms with it, even from the perspective of retirement living.  It is surely that much harder for you at 22, but it is not impossible.  You can, in time, learn to deal with it, and make the most of your precious future.  You are obviously well educated and quite intelligent.  Add that to your truly lovely features, and it's a winning combination!  I wish you peace and contentment, now and for the rest of your wonderful future life.

Comment by LittleSadEyes on August 29, 2015 at 9:30am
sadandunsure it was :'(
Comment by sadandunsure on August 27, 2015 at 7:36pm
Was that confirmed via your biopsy LSE?
Comment by LittleSadEyes on August 26, 2015 at 8:42pm
Oh an ps:
I have Ffa.
At 22.
Comment by LittleSadEyes on August 26, 2015 at 8:41pm
I'm curious as to whether anyone who has gone HRT's during menopause and if any difference was seen?
Comment by Jen on August 26, 2015 at 11:02am

What's wrong with some of these doctors?  They need to put a little bit of care in healthcare.

 

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