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: 599
Latest Activity: Jul 25

Discussion Forum

Dermatologists who specialize in alopecia?

Started by NorthCarolinaMama. Last reply by LauraLGiraldo Jul 25. 2 Replies

Hope everyone is having a great weekend!I'm a freelance writer working on a story about alopecia. I need to find a dermatologist at major hospital or teaching institution to interview -- any suggestions?I've already reached to physicians at Duke,…Continue

Food Allergy Testing question

Started by NorthCarolinaMama. Last reply by DragonandFox Jul 22. 11 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

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

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Comment by Heidi Short UK on May 10, 2013 at 10:55am

Hi Celia I have tried to email you on the address you gave me but it keeps failing perhaps you could email me on heidishort@ymail.com speak to you soon!

Comment by Heidi Short UK on May 9, 2013 at 5:04pm

Just got a bit confused I think this website has had a make over! The pages are now back to front which does make it easier to follow, but a bit confusing when you first  go to the web site!

Celia the train time table says I will be arriving at Burnham at 11.39am, hope thats ok. I have to be back at the station for 3.45pm so I only have a few hours, but it will still be great to meet everyone. See you wednesday!

Comment by Celia on May 8, 2013 at 4:40pm

Heidi - I have never done that journey - but - just ask directly when you arrive in Reading. Please call me to let me know when you will arrive in Burnham. x

Comment by Heidi Short UK on May 8, 2013 at 3:42pm

Sorry I forgot to say hi Christie and welcome to our select group! From your photo you wouldn't know you had a problem with your hair, it looks great.

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.
 

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