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 AnnieMay on January 31, 2018 at 12:14pm

Hi all- I've been on vacation so I'm catching up on all the posts. I will say that I have a new appreciation for any of you living in a hot humid climate. Everyday was a bad hair day for me with my very thin sparse flat bangs and awful high shiny forehead that goes back far enough now that I have to be careful about getting a sunburn there. Ugg. . .Not to mention the dread that comes from a windy boat ride or the fear of getting my hair wet in front of other people. I'm too embarrassed to go swimming anymore. I am so thankful to be able to go on a vacation but this awful condition has changed me and my confidence and I hate it. 

I started this journey with an already high forehead but it is increasing difficult to hide. I got my haircut yesterday and it was so embarrassing to see the look on my hairdressers face as she struggled to find a way to cut my hair. 

But right now my skin is what's bothering me the most and I wonder if any of you have some of the same issues? Someone mentioned that their skin had the look and texture of a basketball and that's a perfect description of my skin. With the exact opposite very shiny smooth skin on my forehead. But lately my skin feels so dry and "leather" like? Gone is my nice soft skin. And it's hard to explain but the skin on my forehead feels SO tight, my eyes itch, my eyebrows are shiny and itch (under the microblading)?

I know I'm preaching to the choir but I'm having a bad day. . .

Comment by Plf on January 30, 2018 at 3:10am

Hi Donna, I have been diagnosed with FFA as well as female pattern hairloss, this was the link to the paper:-wwwsinclairdermatology.com.au/treating-female-pattern-hair-loss-low-dose-oral-minoxidil-spironolacton...

Comment by Plf on January 30, 2018 at 2:11am

Hi Donna, it is oral Minoxidil, very low dose 0.25 mg, if you haven't had any side effects that's great, I have a propensity toward dark hair growth so are worried about facial hair,. Will post the link re research paper when I find it , re some results....but as usually it is not a large study, 

Comment by Donna on January 30, 2018 at 12:38am

Plf I was wondering where you live that you need a prescription for minioxidil. That’s Rogaine right?  We buy it over the counter 5% in the states. Plus all the side effects you say you’ve read about. I haven’t read anything like that. So I’m concerned now, cause I use the Rogaine (minioxidil)  Im a bit confused

Comment by Plf on January 29, 2018 at 4:38pm

Thanks mc, I dropped off my script for Minoxidil last night ( as had to be made up) then started reading all the awful side effects..heart issues, premature ageing....so am about to ring pharmacy to put on hold...more homework required...just when I thought I had made a decision. I'M, all at sea again.  Your timely message has been great..today I'm leaning towards not going down medication pathway...but yes it's early days so this could change again.  So nice to be able to ramble on as I'm sure my friend s and family have heard enough, thanks again

Comment by mc on January 29, 2018 at 1:53pm

darn auto correct...not barn, vain!!!   

Comment by mc on January 29, 2018 at 12:23pm

Not at all superficial!  That's the first thing I noticed over 6 years ago and I've used every product known to woman to fill them in.  Finally last year I got permanent makeup done on my brows.  (SomI never thought I would do).  

I was was so sad avoiding my reflection in a mirror, didn't he my hair done because I couldn't stand sitting in front of the mirror that long.  Getting my brows done absolutely changed my life for the better.  It looks natural and gave me so much confidence!

I did nothing for years because I thought I was being barn.  

All all the best to you!

Comment by Minter on January 28, 2018 at 7:47pm

Liz Lov, you make me want to try a wig too! And you are too right, I don't want to be defined by my high shiny forehead for much longer either :-/ 

Comment by Liz Lov on January 28, 2018 at 4:54pm

Halfbakedwho

I have a super sensitive digestive system which is why

I’ve changed my eating habits, certainly feel less bloated. Has it helped the hair loss? Absolutely not but I do believe it has helped calm my super active immune system. 

I still have some hair, didn’t need to shave it off for the wig, I wear a wig band which keeps it on really well. I’ve decided to grow out my attempt at keeping a fringe for a hair band, will let existing hair all get to one length so that I have enough to show under a hat when I’m not wearing the wig, playing golf etc. Then I’ve got so used to putting the wig on now, I’ll just put it back on after golf . 

So far it works well, I’m away on holiday for a little while longer so it is a great time to experiment especially as it is SO windy here.

Comment by Halfbakedwho on January 28, 2018 at 4:09pm

Thank you both, Liz Lov for being glamourous and loving life, and Ana Braziil for the medicine info. 

I am supposed to go for a biopsy in March. My dermatologist wants me to stop the Clobestal for a month prior to the biopsy. This makes me nervous (more hair loss?) and I’m not sure I want to take internal medicines. But - like I said - for now I will follow instructions. 

My diet has been a bit weird these days. I found myself losing weight - maybe also because of the iron I take which makes my stomach funky. So yesterday I ate (of all things) a giant cheeseburger and fries (NOT McDonalds, a really good burger and fries!!). I eat bread, I eat sweets (in moderation, though weekends get more « festive ») I eat a bit of dairy (it’s France, we do cheese). Would I have less hair loss if I didn’t eat these things? Dunno. Would I feel better? Maybe - it’s been an excessive sort of weekend. 

I try to eat everything in moderation, and most of the time don’t eat much meat or dairy. I like a cookie for dessert though, and my «tartines » for breakfast. If I had a real autoimmune issue (which at one point, thought I did) I would be more strict, but I don’t. 

I don’t eat like an American anymore - we tend to eat real meals with real food and sit down together. I favor organic things, but again, nothing is strict. In years past (waaaaay past) I had an eating disorder, so maybe that’s why being too strict with food makes me crazy (again). 

Liz Lov -  you make me want to shave my head and get the freakin’ wig, which sounds quite awesome. ; )

 

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