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 Kandy15 on February 18, 2019 at 11:20am

I have been using a brow box with a brush and sometimes a brow pencil to darken my brows but I am noticing  more and more that the left one is disappearing on the last third.  This if the side of my head where I have lost more hair too.  I guess I've been lucky to have kept my brows for as long as I have but now it is time for me to do something about them before they are totally gone.  I will check into who does microblading in my small town to see if I can find someone. Can someone tell me about how much they pay to have this done?  Are the eyebrows scabbed up afterwards and look bad until they heal?  I have had to have bangs cut now that are long enough to kind of cover the brows.  My 83 year old  mom loves the bangs.  "Honey,  when you get your wig, you should definitely get one with bangs because you look so cute!"  Well, thanks mom but you remember 10 year old me with bangs - I'm still getting used to being 61 with bangs. 

AnnieMay, I am also working hard to control my stress levels.  It is a work in progress to be sure.  It got the better of me yesterday and I had myself a good cry, which I haven't done in a while.  Grief tears are full of toxins so it's good for us to get them out of our system when we need to.  I downloaded an app called CALM last month and have been using it to meditate, which I have never been very good at.  It really does help me to focus for those 10 - 15 minute sessions.

Thinking of you all who are on this site and sending big hugs to each.

Comment by Minter on February 18, 2019 at 8:38am

Yay for you AnnieMay!  It is great reading your happy post :-D

Getting my brows done was one of the best things I've ever done also, they make such a difference- you don't even realize how much until you have them done!  & yes the first 10 days is kind of ugh. but well worth it in the end.  I use Ananda salve also and just got the oil over the weekend, very happy with their stuff!

Comment by AnnieMay on February 17, 2019 at 4:06pm

Hello ladies. A bright spot on a Sunday. I had my eyebrows micro bladed the first time almost two years ago and they had faded to almost nothing. We all know how exhausting it is to deal with our hair issues but dealing with almost no eyebrows was even more discouraging. 

10 days ago I had them microbladed again. The healing process isn't fun BUT I feel like I have my face back again. They're not perfect but I feel like I have a good starting point in the morning which is huge. I would strongly encourage anyone who's lost their eyebrows to consider it!

I've also been using the ananda hemp salve and the scent is strong but I'm finding it gives me some relief from the awful itching I have especially in areas where I've lost hair like the back of my neck. I've been trying the hemp oil on my scalp and it's helping as well. 

I'm working on managing my stress levels. I know that when I'm dealing with more stressful situations the itching is worse.

All of this has come from all of you on this site. Thank you!!!

Comment by Afraid on February 14, 2019 at 5:17pm

Happy Valentine’s Day!

HBW I agree I love your hair! I also completely understand your perspective, as does everyone else on this site, because it’s completely relative to how much hair you had previously and what the future holds.  It’s the complete unknown.  We all fear the worst and hope for the best. NOBODY understands unless they have the condition.  

Kandy15 thanks for your posts you are such a welcome addition to this group. My reading connected to acupuncture and alopecia seems to state it can help re alopecia areata but not LPP/FFA... however, this is my latest ‘hope’ and Ive had 3 sessions to date with a pretty amazing acupuncturist who came highly recommended and whilst he’s not promising anything I am learning so very much from him (he lectures and trains in other countries too!!) I am new(ish) to the concept of eastern medicine and it seems to make so much sense.  I also like the belief that we can self heal too.  Heavens above though, don’t you just feel so exhausted with this whole thing?!?!  We MUST stay positive, calm and stress free as much as we can.........but it’s soooooo hard!

big hugs to you all xx

Comment by Kandy15 on February 14, 2019 at 10:24am

Happy Valentines Day!

I was wondering if anyone who has tried acupuncture for this stupid FAA has had any success as far as stopping the progression of it. I have seen posts where it has been tried by some but I can't find any results.  I ask because a very sweet friend of mine went yesterday to have acupuncture to get some relief for her back pain.  She asked the acupuncturist if it would help alopecia and the lady told her that she had other clients that have alopecia and their hair has grown back all curly.  I explained to my friend - again - that I have a scarring alopecia and it might not work for me.  She confessed that she didn't know that there were  different types of alopecia and was excited that she may have found a cure for me.    Anyway, I just wanted to ask that question of the ladies on this site because we are obviously the "experts" with having to deal with this.  I think we know more then even the dermatologists.

Comment by 2Dachshunds on February 14, 2019 at 10:03am

Halfbakedwho: I agree with everyone!  Your hair does look fabulous!  Maybe this is a reminder to all of us (me) to let go of my obsession of looking at other people's hairlines and just live.

I know it is easier said than done and I want to enjoy life more instead of worry, worry, worrying about my disappearing hair. 

Happy Valentine's Day everyone:  Big Hugs to you all!!!

Comment by Minter on February 14, 2019 at 8:06am

Wow Halfbakedwho, your hair does look fabulous! But, saying that I know what you mean- to everyone else whose head it is not on- it looks fine, but when it is your hair you just know.  Anyway- 

Happy (Belated) Birthday!!!!

Comment by Halfbakedwho on February 13, 2019 at 9:34pm

Thank you my friends. It’s not easy hair, but it seems that unless you’re my sister (who got the good hair) then complaining about hair is just a sort of female rite of passage, whether you have it on your head or not...

Comment by Plf on February 13, 2019 at 8:32pm

Oops celebrate

Comment by Plf on February 13, 2019 at 8:32pm

I agree, we all have this angst, I know you know that your hairline is disappearing, but halfbakedwho, your hair is amazing, I cannot tell it's receding, ..celeb cele your curls

 

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