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: 600
Latest Activity: on Wednesday

Discussion Forum

Hair Toppers

Started by Leni. Last reply by Lang Bozic May 22. 10 Replies

I am interested in getting a topper but don't know where to go for one. Having one of those weeks when the hair keeps falling and I am not feeling very comfortable. I don't want to spend a lot of money. Thinking of ordering off the internet. Please…Continue

Get Ahead of Hairloss Event plus new information on FFA

Started by Liz. Last reply by Carol Aug 7, 2025. 11 Replies

Hi I don't post on here much so I may well be giving information which you might have been discussing already. Are any of you in the UK going to the Get Ahead of Hairloss event in London at the end of September? It has been organised by Dr Wong who…Continue

Food Allergy Testing question

Started by NorthCarolinaMama. Last reply by lordiron Nov 25, 2024. 10 Replies

Hello!I was wondering if anyone has been tested for food allergies to determine if a particular food is causing inflammation, which in turn could exacerbate FFA. I had the skin test a couple of years ago at an allergy clinic, and it came back…Continue

CARF Conference 2018 Notes

Started by CurlyK. Last reply by kevinsstelly Jul 14, 2024. 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

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Comment by Debs on May 8, 2013 at 3:42pm

LIz, I have looked at 3 photos of this lady and I agree with you that it does very much look like FFA.

Comment by Heidi Short UK on May 8, 2013 at 3:34pm

Celia when I come to your house on Wednesday, I have to change at Reading, do you know which platform I need to be on to catch the train to Burnham? I will find it if you don't know, but it might help to point me in the right direction! Looking forward to it!
Liz your hair looks great, and I did look up that lady and she looks very similar to that country singer I was talking about. I don't know if they have FFA or just very high hair line.

Comment by Alice on May 8, 2013 at 8:52am

Pam, I have also debated trying Rogaine, but am not quite ready to take the plunge, maonly because you have to keep using it. My local derm thinks the hairloss at the sides may not be FFA, due to the lack of obvious inflammation but it looks to me like all of us have the same problem - bumps on top but more hairloss at the sides. I have an appt at Baptist Hosp in W-S, NC in Feb, so plan to wait for a 2nd opinion there. I stopped coloring my hair when my scalp was very irritated and it's gotten thin, dry and frizzy. I've tried thickening shampoos and conditioners but can't tell that they do much.

Comment by Liz on May 8, 2013 at 8:37am

I have just seen a lady on the news who looks like she has FFA. I googled an image of her and it looks like she has a receding hairline and temples. Her name is Kathryn Smerling and she is a therapist. Have a look and if a few of us feel this might be the case I think I will write to her. She must be well known in her field of work and that may be helpful in our quest for my knowledge/research of this condition. Anyway, have a look at her image and let me know what you think.
xx

Comment by PJ - MN, USA on May 8, 2013 at 12:16am

Wow Liz - you look great!! I would never have guessed you had FFA. Enjoy your new style. Thanks for sharing your photo.

Christiekd thanks for sharing your info. Good to hear when someone has good results with the meds. Our hairdressers/stylist do play a very important role in all this.

Comment by PamW San Diego, CA, USA on May 7, 2013 at 8:31pm
Liz, you look great! It is so important to have a stylist that will take the time to help. All I see are your beautiful eyes.

Welcome to the group Christie. I am debating about using Rogaine for women. My derm says that some of the hair loss I am experiencing may not be entirely due to FFA, as there are many other reasons for hair loss. Do you feel that Rogaine has helped with the volume of your hair? I know hair cannot grow from scarred follicles, but I would like to thicken up what I have. I would appreciate your opinion.
Comment by Simone NJ USA on May 7, 2013 at 6:15pm
Welcome Christiekd! Liz, you look great!!! Wish I could go to your stylist!!! Also, Celia...thanks for bringing the questions to Dr. Harries...hope you are doing better....xx
Comment by Celia on May 7, 2013 at 4:16pm

I meant was it easy to find us - not is....another typo !

Comment by Celia on May 7, 2013 at 4:15pm

Liz - you look amazing ! What a good cut ! I am looking forward to meeting you all so much. christiekd - nice to have you onboard. Hopefully docs will begin to collect and use information to help people like us. Trouble is - it is rare and we are all very unfortunate to have this. Keep communicating - was is easy to find us ? We have been around for almost one year now on this site. X

Comment by Debs on May 7, 2013 at 3:17pm

LIz, your hairdresser has done a fab job, your bob looks lovely and your hair really falls nicely. You can't tell you have hair loss.

Christiekd, welcome to the group, it is very uplifting to read that you have had success with these meds and that your FFA has responded to treatments. Great stuff. XX

 

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