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 Lauren on December 1, 2015 at 10:30pm
So I realized I didn't even ask the question, has anyone else itched their scalp really badly where inflammation was or what do you think about this?
Comment by Lauren on December 1, 2015 at 10:28pm
I should also add that there were other places on my scalp I would itch and pick too but never any hair loss there
Comment by Lauren on December 1, 2015 at 10:18pm
So I have a question to you all who have had inflammation, itching or both. Before I was diagnosed my scalp at the front would get itchy and scaly so occasionally I would end up picking the scaly skin off, I'm sorry if that is gross. What happened is that it would just get raw. My reasoning was that i thought i just had dandruff/dry scalp because that was what hairdressers and derms had said. So I thought if I got the scales off it would be better and go away, but obviously it just exacerbated it. Now I'm worried that maybe that picking actually made me lose hair. The loss is more on the left side and the inflammation scaling was usually more towards the right. Idk, I hate to think I may have actually caused more loss then I would have actually had if o had just not touched it. Also , when I would pick I was careful and never pulled any hair out and hair never just fell out after that I noticed.
Comment by christiekd on December 1, 2015 at 6:13pm
Marilyn, I can't refrained you as it says that I already sent you a friend request. Not sure what to do to resend it. Can you email me at christiekd@sbcglobal.net. I don't check this one much, but can send you a better email from there. Any suggestions from anyone on how to friend on this site, let us know. Thanks!
Comment by Marilyn on December 1, 2015 at 5:48pm

Christiekd-please refriend me-I just saw your post and I will be at raydiance this friday afternoon.  I would love to be able to speak with you!!  I have tried to friend you and it is not working.  Not only do I have ffa but computers and I sometimes do not get along!!!

Comment by MnM on December 1, 2015 at 4:24pm
Liz did you get it at Lucinda Ellery? It looks like a great system, but they only have two US locations. I was trying to find other places that have a similar system, but haven't had any luck yet.
Comment by Liz on December 1, 2015 at 4:03pm

Today I had an intralace system. It took about 6 hours. I now have hair covering my bald patch. The system stays in place for 2 years with adjustments every 2 months. It feels like a lot of hair! I'm hope/sure I will get used to it.

Comment by Wyobalance on December 1, 2015 at 3:43pm

My pieces are very small.  approx 2 inches by 1/4 inches above forehead and 

 1 1/4  inches by 1/4 inch on the right temple (areas where I've lost the most hair).  I use a tiny piece of blue roll tape on each end of the hair piece and one small piece of tape in the middle of the hairpiece.  There are lots of different tapes.  The one that lasts a month or more for me is a blue roll from Hair Direct (I don't know the name of the tape).  

Comment by Sad in chicago on December 1, 2015 at 3:40pm

They clip in.  There is a base and clips around the edges.  A qualified hair replacement (wigs, pieces, etc.) stylist should be able to style the piece and fit it to blend in with your existing style, etc.  In my case I have fairly short hair and the piece has a heavier front bang with a pixieish layed top and back and sides blending into mine.  I am conscious about keeping the colors close as I color my hair.  Also, sometimes I need to "backcomb" (they used to call it teasing) my hair where the clips fit in as I feel it holds it better.  Anyone who knows I wear it really cannot tell and comment on how great it is.  I like it most of the time.  Sometimes I feel like it looks awkward, but that is just my own insecurity, I think.  the stylist will teach you how to take care of the piece in terms of washing etc.  My "good" one is real human hair, with synthetics for exercise, sun, just at home, etc.  It is a lot to take care of, but for me, worth it.

Comment by jess on December 1, 2015 at 3:09pm

Wyobalance,

How to you get your hairpiece to stay on your head?

 

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