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 Minter on January 4, 2018 at 6:49pm

Rachel Germany I just checked out Three Bird Nest they do have good looking headbands, though yes, maybe a bit flamboyant for me and my weekly trip to the Walmart- but who knows- by this time next year I will have no problem rocking a velvet turban while grocery shopping! 

Comment by Rachel Germany on January 4, 2018 at 9:24am

Hi Ladies, thought I would share what I just found on the Internet.  Three bird nest are selling some pretty good head wear in the way of headbands, headpieces and velvet turbans.  Some items are maybe a little flambouyant  but what the heck.  They are US based but from what I understand they deliver internationaly.  Have fun looking.  

Comment by Minter on January 1, 2018 at 12:59pm

Thuya essential oil also looks promising, though I read several warnings on different sites that it should be used with professional guidance only :-/ yikes! So I think I'll start with castor oil and take it from there for now :-)  I would really like to learn more about essential oils, they can do so much & I feel like I am just skimming the surface when it comes to the use of oils. 

HBW, it doesn't sound corny at all to be a role model for yourself, it is a good outlook for the "art of living" like you said- and it is something that should be embraced or else this stupid FFA will very easily take over our lives- 

Happy New Year everyone!

Comment by Halfbakedwho on January 1, 2018 at 6:45am

Another thing my dermatologist mentioned is something called Thuya essential oil. I too have started using a bit of Castor oil based on your experience - but if I have too many things, I'm going to forget them (forgot this New Year's morning to put on the cortisone!). Oh BTW HAPPY NEW YEAR to all, with burn-out of FFA, with health, with hope, but especially with knowing what's important and essential and being okay in the face of whatever comes. Maybe it sounds corny, but I want to be a role model for myself in how I deal with this, and other things that come at me in my life. The art of living is all there is. Take good care. 

Comment by Minter on December 30, 2017 at 6:06pm

I'm going to check out my local health food store and get some organic castor oil from there I think- thanks for the info on how you use it, a bit of trial and error is involved with the amounts I suppose for each person and my hair always looks god awful in the morning anyway, so having a bit of oil on it as well isn't going to make much of a difference haha :-D  Thanks again for sharing, much appreciated!

Comment by illustr8r on December 30, 2017 at 12:26pm

@Minter I put castor oil on at night. I bought an organic brand online from Amazon. I put a drop of oil each on my left fingertips then transfer some to my right (it’s pretty thick) then just lightly massage it from the top/sides of my hairline and further back. If I have a pinpoint itch I will drop a small amount on it and massage it around. I put a towel on my pillowcase too. I wake up looking god awful! LOL and it washes out just fine in the shower. 

Right now I’m not on any meds except Latisse for my eyelashes. I’m aware of my gluten/dairy/sugar intake but I still eat them occasionally. Things have calmed down for whatever reason-just thankful for it and crossing my fingers (and toes).

Comment by Minter on December 30, 2017 at 8:54am

illustr8r, monday is my grocery shopping day- so it is on my list to be gotten.  I'm hoping it will also help with my bouts of horrible, intense itching on my wrists/forearms too (I use tea tree oil and clobetasol when it gets bad, but if I can avoid it getting bad in the first place that would be a godsend for me)! and will give it a go on my poor arthritic joints and tendons-  If nothing else, I will have nice soft skin and hair from using it and if I have tummy trouble, it is there to make me better!  

I am getting my hair system removed this week, so I will start using the castor oil on my scalp/hair after that.  It is great news that your hairdresser has noticed a difference- though I don't want to jinx you either, knock on wood! ;-) 

Just a question on how to use it on your hair- Do you massage the oil all over your entire scalp? Do you have to wash it out every morning so it doesn't look oily and heavy? I am really happy for you that you have found something that is helping you and especially something that is so simple and not a prescription med with all sorts of nasty side effects! 

Comment by illustr8r on December 30, 2017 at 3:52am

@Minter I’ll look forward to hearing your castor oil success! Think positive! I got my hair cut today and my stylist said my hair thickness and body is much improved from when I saw her 7 weeks ago. She didn’t have to cut down the “good” hair so much as to blend it with the bad hair in front. She’d do that so my head wouldn’t look like a football. The sides have some weight to them and aren’t so flyaway and same goes with my bangs. Knock wood of course-I don’t want to jinx myself! The gairloss areas are still the same but the thinning areas look better. I use castor oil every night. Keep us posted! :)

Comment by Minter on December 29, 2017 at 6:13pm

illustrated8r, I've googled castor oil- because even though I've known about it all my life, I've never used it for anything- apparently it is a magic oil that can be used for all sorts of things!  I think I will get myself a bottle as even if it doesn't work to make my hair grow, it can be used as a conditioner, a moisturizer, or for arthritis/joint pain so it will be good to have it in the house irregardless :-)

Anne Louise, nothing wrong with being in a crummy mood because of FFA, period or no!  

The healing time after getting brows done is the worse, I pretty much told everyone that I came across that I got my brows done- I didn't do my make up in the dark (my brows were almost black while healing)!  I've read about brow "wigs", but don't think they would work very well for me- but it will be interesting how they do look/last.  

I will look into Lash Boost, thanks for mentioning it- I have sensitive eyes also yay so reading that Latisse made your eyes red, I don't need that happening!

Halfbakedwho, glad to hear you have found someone that might be able to help, I'm hoping for the best for you!

Comment by Halfbakedwho on December 29, 2017 at 2:52am

Yesterday I went for a second hair consultation. The first one was a couple of weeks ago, and the lady said she coudn’t do anything for me, and that my medicines were « bad » and that her natural oils would « get the bad out » rather than keeping them in (cortisone). Not helpful. 

Yesterday’s consult - helpful - and I found out I’m lucky and not-so-lucky. Lucky b/c my hair is so thick and curly it covers up the missing areas. Not-so-lucky b/c my hair is so thick and curly she’s going to have to see if she can special-order hair extensions for me, b/c few people apparently carry European curly hair. 

On the other hand I think I can wait and see another six months. She says it’s really not noticeable (on the top of my head), and it’s freaking expensive (abour 360 euros, go back every three months). 

I’m just relieved to have found someone who’s taking me seriously and is giving me a future solution.

 

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