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: 600
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 Lo on July 15, 2015 at 6:58am
He seriously told you of it was FFA that there is nothing that can be done medically to work with it??
Comment by LittleSadEyes on July 15, 2015 at 6:14am

Thank you all. I feel a lot better just being able to cover it up. Kristen P he just looked at me and said "you don't have it", did a pull test on my fringe and sent me away with oral minoxidil. He looked at me like i was a freak the whole time i was explaining to him how much my hair has changed. He agrees that i have Androgenetic alopecia, which i already knew, but he just said "Look, you don't have ffa, and even if you do, nothing will help you. See me in 4 months". I MADE him take a biopsy though. I said that i wanted it done for peace of mind. I'll find out in 1-2 weeks. Gosh some of these doctors are total A holes!!

Comment by Sad in chicago on July 14, 2015 at 6:29pm

Awesome....good for you.  I could never do anything like that as my hairline in front is so receded I look like a freak.  You look cool, cool, cool beyond cool.  

Comment by Kristen P on July 14, 2015 at 6:24pm

LittleSadEyes - that haircut is fierce as heck! You look amazing, like you're on the pages of a high-fashion magazine!

Have you received results from your biopsy?

Comment by LittleSadEyes on July 14, 2015 at 6:14pm

when frustration strikes and you don't care anymore 

Comment by leelee on July 14, 2015 at 12:29pm

i'm new to the group, so I just got an email about a message from Mildred about a Duke study.  That is within driving distance for me, soId like more info.  Anybody know about it?

Comment by LittleSadEyes on July 13, 2015 at 7:00pm
Sas Holland, Thank you for that information.
Unfortunately I do notice a lot of itching and flaking, redness... not so much tenderness. I do wonder whether or not the minoxidil exacerbates this. For now i'm just losing fast amounts of hair. I have one eyebrow that looks lower than the other because it's lost more hair. I washed my hair the other morning, got out of the shower and saw this huge chunk of my hairline missing with a few raggedy hairs around the edge... i looked like sh*t. So i went and shaved half my head and got a fringe
Looks less like I'm balding but doesn't fix this Issue sadly
Comment by Sas Holland on July 13, 2015 at 5:13pm

Hi Littlesadeyes, My heart goes out for you too, you are so young.

I hope my story helps you a little bit with hope;

my FFA looks like it has burned out ( for now or for ever, who knows?) because I don't see or feel anything happening. I am not using or have used any medication or medical treatment.  When I found out that I had FFA (last sept.) it already was very little active as my biopsy showed. I did try the AutoImmune Protocol  (A.I.P.) diet and after that the IgG blood testing diet, but I could not notice anything in my body and since I already had no symptoms like itching, redness, flaking, tenderness or visible hairloss I stopped those diets because I found them hard to follow..

So  FFA can stop or slow down just by itself I think.

The only thing I did  and still do and in which I really believe that it helps,

 I started Zen meditation twice a day 20 minutes to reduce the stress (for the first couple of months I could not think of anything else than my FFA and worry how far it would go) This has helped me very much, because now I don't think about my FFA much.

I strongly believe the  heavy stress I had about 10 years ago caused my FFA. And I really believe that trying to reduce stress and deal with things that happened in the passed that causes stress will help.

I also don't use shampoo and styling products  with sulphates, parabenes and  silicones any more (it is called the Curly Girl method), but I started that  already about a year ago before I found out I had FFA. My hair looks much more healthy.

I really hope yours will burn out too and I wish you al the best,

love

Sas

Comment by Sad in chicago on July 13, 2015 at 5:02pm

Interesting.  My thoughts were it might not work in the first place, but I didn't think it through to where it could happen AGAIN.  Makes sense, but so frustrating.  I have been dealing with this for three years now and I cannot get past my sadness, discomfort and anger.  I have good days where my hairpiece looks and feels OK so I do too, and then days where I cannot even look in the mirror.  

Thanks for passing along your research.

Comment by Nancy79 on July 13, 2015 at 4:44pm

I read a research article on Hair transplant and FFA. A major portion of the hair fell out within one year and all of the transplant was gone within three years. The same process that attacked the old follicles just start in on the transplanted ones. Even if it is dormant, I think it would go if there was a reoccurrence. Given this information I quickly decided hair transplant is not a viable option. I feel the major expense would be wasted. Sorry it was not better news.

Nancy

 

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