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 Bloomingdalekid on October 25, 2018 at 2:58am

The salon I used told me up front that there was a 3 month waiting period due to demand of the type if hair that was being ordered.  I guess there are only a few places in the United States that are used.  She uses someplace in Florida, I believe.  Anyway, I was told to order 2 systems and that each would last about 6 months.  From those I have seen on this site, they vary from 2 - 3 years, so I will wait and see if I really need to order a new one.  She told me that it’s always good to have the spare on hand in case there is a tear in the lace cap, which is unrepairable?  So much to learn.  I am in Fiji right now and the “band” around my forehead got a little too much sun today.... ugh.  

Comment by Halfbakedwho on October 25, 2018 at 2:51am

Hi Liz - I too am curious - you had one system that you would have re-bonded over your three-year period? Last year, I consulted at a salon where the woman said I'd need to have two hair pieces made - maybe this isn't necessary?

I will be consulting tomorrow at the same chain of salons but in my town - not the same store. I don't want to be upsold. The other issue - I'm understanding better how this all works - it takes a few months to create the hairpiece? In that case, it's a bit of a roll of the dice - right now I can hide the hair loss, but again I've noticed that I've lost a good bit on top this fall. I have to somehow predict or be able to foresee what the next 3-6 months will look like. The lady over the phone said it's good to make the appointment now to not be in a "situation d'urgence" - in French, "an urgent situation" in a few months. Wow - be a bit ominous why not...! Let's freak you out, and threaten you with looking like a freak... order the system NOW. It's sort of like if you don't take your umbrella you are asking for a downpour. 

I'll let you know how it goes... and listen to your experiences...

Comment by Afraid on October 24, 2018 at 10:57pm

Hi Liz

that sounds exciting although a little daunting I expect.  How have you found wearing your current system?  Was it from a particular salon?

Did you go to the conference in London in September?  Was it useful in any way? 

Comment by Liz on October 24, 2018 at 1:52pm

Well I'm going to have a new system on Sunday. I'm excited and a little apprehensive. The one I'm wearing now will be 3 years old in December so it's time to have it redone :) 

Comment by Afraid on October 24, 2018 at 1:45pm

Ah how grateful I am to you all! Thank you for your inspiring stories and strategies :-) x

Comment by Minter on October 24, 2018 at 9:26am

@Bloomingdalekid Wow this is very exciting!  Can't wait to see the photos :-)  

Comment by Bloomingdalekid on October 23, 2018 at 3:12pm

Hi everyone.  I ordered my system about 3 months ago and it should be waiting for me when I return from vacation.  It’s a big investment and I certainly hope I’m not bothered by it.  I’m looking forward to looking in the mirror and not seeing the 6 inch forehead that is so prominent to me.  My friends say they don’t notice it, but it’s all I see when I Iook in the mirror.  My hair has also thinned at the crown, but i think that’s just age and not related to FFA.  I will post pictures after I get the system in early November, and let you know how it feels.  

Comment by Minter on October 23, 2018 at 12:29pm

@Afraid, I lasted only about a month with my system- I LOVED the way it looked, but being someone who doesn't even like to wear a hat, having it on my head 24/7 drove me bonkers and that is the only reason I had to have it gone.  I was getting so many compliments and it was great seeing myself in the mirror instead of looking away which what I do now when I pass a mirror out in the world :-(  anyway, I would definitely recommend you give them a call or email, they are very helpful & patient and can & will pretty much answer any questions you have, good luck if you go with L.E!  

Comment by Halfbakedwho on October 23, 2018 at 11:43am

I called yesterday for an appointment at a hair/wig place and explained my situation. Apparently, they will make a custom thing for me with the curl.

Yes, it looks like I have a lot of hair because it is a lot of hair - but the thinning on top is getting harder to disguise because it's incongruent with the big mass.

She asked me over the phone if the hair loss had slowed down, and I said no - not at all. I suppose this is an important consideration given the price of these custom hairpieces - that maybe a centimeter or two of difference will cost me a whole new hairpiece? Dunno.

Stay tuned for the next episode of Follicle Follies (in France!) with me, your hostess, Half-hairless-head. But yeah, a lot of hair - there's that ; )

Comment by illustr8r on October 23, 2018 at 11:27am

@Afraid I hear ya about ears! I inherited my Dad’s not petite and not so pretty ears that are a bit big and stick out. I decided if I have embrace a short hairstyle that looks intentional to hide my hair loss I’ll do it. So, there are the ears for the world to see. I bought a gold ear cuff to “decorate” one ear. I do grow tired of making the best of a bad situation.

 

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