Frontal Fibrosing Alopecia

Information

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

Comment Wall

Comment

You need to be a member of Frontal Fibrosing Alopecia to add comments!

Comment by Jen on April 23, 2014 at 2:45pm

Hi Jules,

Thank you for your reply.  Would I be presumptuous to ask if you can post pictures of the 2 hairpieces before you attach them? I am thinking that pictures after you attach them is too much to ask.  It would be a really good thing if we can figure out a solution to the hairline so we can feel normal again.  For now, I may just need to work on the edges with small hairpieces and clever hairstyling. I am not ready for a wig.

 

My FFA has absolutely no symptoms. No itch or pain or inflammation. I just lose the hair in the shower.  Sometimes  I may see 4 or so baby hairs on my desk which look like the ones on my hairline. 

Comment by Jules UK on April 23, 2014 at 3:32am
Jen, I've ordered 2 hairpieces just as you describe. They're from Pam's hairdresser in Cheltenham but they're not ready yet. They should be OK to leave in situ and survive washing, drying, swimming etc.... That's the plan anyway. I'll let you know.
Re the posts about how to tell when FFA is active, I find that the "doll's head hair" appears plus some mild itching or that "crawling" sensation occurr. I have it at the moment and my front hairline has receded by about a cm in places. Looking a bit chewed! Hey ho!
Comment by Jen on April 22, 2014 at 6:08pm

Hi Everyone,

I was looking on line at the lace hairpieces for sideburns and wondered if this (cut to fit)  would be a solution for areas around the face where the hairline has receded. I am also wondering if anyone has tried any small hairpiece attachment and was satisfied. 

Warm regards,

Jen.

  

Comment by Kath UK on April 22, 2014 at 5:25pm

Debs - I've been following your eyebrow tattoos information with interest as I'm now thinking of having it done. (I find that penciling in my eyebrows every day and checking all the time to make sure they are OK is a real bore).  You seem to have had a great success with your tattoos but there's no way I can get to your lady in Chertsey so I guess I will have to look around Edinburgh and see if I can find somebody good up here.  How long did your tattoos last?  Did it hurt and do you know if there is any qualifications that I should look for in a semi-permanent cosmetic tattooist?   I'd be really grateful for any info.

Comment by Debs on April 22, 2014 at 3:43pm
Very happy, had my eyebrows topped up this morning, had semi permanent makeup last January, still looked nice but the tattoo fades a little and you do need to get them topped up. I want back to the fantastic Belinda Hayle in Chertsey, Surrey. She has worked wonders again. Thoroughly recommend Belinda to any ladies that want to stabalise the appearance of eyebrows/eyelashes. It's a huge confidence boost.
Comment by Brenda, IL US on April 22, 2014 at 9:21am

Hi Jess.  My derm said the follicles were inflamed almost to the crown.  That was very hard to hear.  The itching has started on the top of my head too.  Alice i havent grown any hair on the sides.  I have some new growth on top but not where its scarred.  Its strange that i never had any inflammation on the sides or itching but the hair started falling out there first.  Has anyone ordered a wig or head cover from tlc?  

Comment by Alice on April 22, 2014 at 8:20am

Rogaine users - did you get any new growth on the sides, where the hair is very thin but the scalp does not look inflamed? I'm finally seeing new growth but it's all on top. Naturally, I'll take what I can get but was hoping to see some new hair on the sides. 

Comment by Debs on April 22, 2014 at 2:02am
Mandy, hair transplants will reactivate FFA, regardless of whether our FFA is active or not this is not an option unfortunately. The 3 derms that attended the CARF conference in London November 2013 we quite clear on this.
Comment by Liz on April 21, 2014 at 4:50pm

Hi Jess. I can tell if mine is still active by doing a gentle hair pull. The hair will come out in the active area with no difficulty or pain. 

x

Comment by Mandy on April 21, 2014 at 4:14pm
Hi Jess, my Derm looks a my scalp at every appointment under a small hand held micro scope... He explained that my FFA was active and that he could tell this because my scalp was pink and some of the hair follicles were enflamed... My FFA goes back about 2 inches and is in a small circle at the front of my head... At the moment I have lost about 1cm at the front headline and about 1.5 cm at each temple.
I am no longer taking medication but use a topical very occasionally if I get any itchiness! The belief is that you can not have a transplant until the FFA has burnt out.
 

Members (599)

 
 
 

Disclaimer

Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.

© 2026   Created by Alopecia World.   Powered by

Badges  |  Report an Issue  |  Terms of Service