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 CurlyK on October 1, 2016 at 7:55am
That's a great price. Mine cost 1600 for one piece that should last me almost a year. Is yours human hair?
Comment by Brenda, IL US on September 30, 2016 at 11:29pm
CurlyK I ordered 2 pieces that sound just like your piece. They charged me $1695.for both. I found a salon in Terre Haute, IN that's only an hour and a half from me. I have to wait 6 to 7 more weeks for them to be made. I'm dreading getting the top of my head shaved but I'm looking forward to having hair on the top of my head. I've purchased 3 wigs over the last couple of years but I haven't worn them. I've been wearing headbands and bananas which don't look very good but they cover some of the loss. Sorry I'm rambling. I'm just so excited that someone is having good luck with this type of custom piece.
Comment by CurlyK on September 30, 2016 at 10:35pm
It's glued all the way around the base of the piece. It's glued right to my scalp and they shaved the top part of my head to do this. They turned me around in the chair so I couldn't watch in the mirror. They attached the piece and when they turned me around I cried when I saw hair on my head.it was so pretty! The two ladies in the room said it made me look 10 years younger. Now if you read my posts from 3 weeks ago you know I had a meltdown for two days after cause it was so traumatic but now I'm getting used to it. I get nothing but compliments on my hair both from people who know about the alopecia and those who don't.
Comment by Sad in chicago on September 30, 2016 at 4:47pm

so is it glued in the front and then clipped in to your hair or glued all over?  If glued all over, then it is glued to your remaining hair?  thanks!

Comment by CurlyK on September 30, 2016 at 4:27pm
I don't take mine off at all. I sleep, swim, bathe etc in it. I will go back to hair place once every 4-5 weeks to have them remove it, clean the piece and my scalp and reglue it. So far the glue is holding tight. Kind of like a surgical glue. It does itch a little at times but not a constant itch. It's comfortable for the most part. Took some time to get used to sleeping on it.
Comment by MnM on September 30, 2016 at 3:52pm
Thanks for your responses! I've lost about 2 inches at the temple and my front hairline is really active right now, so I want to be prepared in case I need a piece in the near future.

Sad in Chicago - Thank you for the salon names. They were ones on my list of places to look into, so I'm happy to get a recommendation from someone with experience.
Comment by BBQueen on September 30, 2016 at 2:40pm
Hi Everyone, I feel like Ive been through so much getting a hair piece and after this year Ive learn to almost get it perfect. I have a system that tapes in the front and clips to my new hairline. The latest one on order take 3 month since I went thru a Hair Restoration co. I learned to put dark roots in my pieces to make it look more natural and it really helps. Im going to have a specialist put the roots in next time becuz you dont want to darken the hair knots on the lace cuz it makes it look like you have a dirty scalp. She will also perm it to match my curly hair. I learned this from watching all the wig videos on youtube and talking to 3 different hair restoration companies. If I continue to lose more hair I will have them glue it on and have it removed and reglued once a month just like what they do for mens topaes. Im waiting and hoping my inflamation will stop so I dont have to go to a wig. So hard to go thru this but Im doing the best I can to learn everything I can to get thru this. Ive posted pictures of my current piece on one of the posts here......
Comment by Sad in chicago on September 30, 2016 at 2:30pm

So Curly K do you remove the piece every night and re glue the next day?  Does it itch?  I do find the tape "gives" occasionally especially from summer heat, etc.  What kind of glue?  none of my ladies have turned me on to glue.  I did try a "sports" tape with breathing holes in it, but it irritated me and gave me a rash on my scalp/forehead where it sat.  

Comment by CurlyK on September 30, 2016 at 2:19pm
My custom piece is actually glued to my scalp all the way around. The hair is long and thick enough to cover everything it needs to. About 1/3 of what you see is my real hair and 2/3 is from the topper. Even when windy it's not bad. If I lift up the hair you can see the baldness leading back to my ear.
Comment by Sad in chicago on September 30, 2016 at 2:09pm

Two places do it.  I had great success originally with J. Krause, Sandy,  in Skokie and continued to go to them, including this last new custom topper which I am waiting for.  However, I went for another piece and found Hair For You Salon in Arlington Heights as well, see Linda, which will do it too.  I am happy with both places.  They are very different in personality.  J. Krause has been in business for years and years, Sandy runs it, and is the daughter of the original owners.  Linda owns and runs Hair For You, which is a full beauty shop as well as a great resource for anything you might need.  I tried WHI institute too, and found the downtown thing as well as the price, daunting.

 

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