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 Celia on November 6, 2013 at 7:39am

I have just looked into          Treatment for FFA    on the internet  - there was an interesting youtube video (8 mins) that may be worth watching - (cancel the ad at the beginning !)   

Comment by Mandy on November 6, 2013 at 7:01am
I agree ladies... My head can look perfectly normal when I get up but I have late checked it a work and it is bright red again... My job can be very stressful and busy... But we all need to pay the bills! I am looking into work four days and that would then give me a long weekend :0)
I'm also taking aconite as they believe the RTA I was involved in 10 years ago could be the root cause??!
Comment by Caro UK on November 6, 2013 at 4:45am
I agree. I'm sure my immune system has been damaged by working nights. I first noticed my FFA about 18 months ago. I had had a period of nearly three years when I was not working and I felt really well during this time. I had to return to a very stressful job three years ago. I'd spent a year looking for other less demanding work but had got nowhere. From the first day I felt stressed. I was working 30 hours a week to start with. It was too much but I needed the job and that was the contract on offer. After a few months I asked to work nights. I had always worked nights in the past. It is very hard on the immune system but I cope better with the work at night. I work a twelve and a half hour shift on my feet pretty much continually, sometimes without a break. I'm 58. Last year I asked to reduce my hours which was allowed. It has made a difference as I have more time between shifts to recover, but the stress I am putting my body through every time I go to work cannot be helping me. My immune system is constantly being compromised but I have to keep going for another 18 months before I retire. I'd be interested to know if there are any other shift workers on here who have been similarly affected.
Comment by Brenda, IL US on November 5, 2013 at 9:24pm

I really believe this is stress related.  Every time i have been under extreme emotional or physical stress my temples have receded and my hair has thinned.  It always grew back but not as thick.  Since i had surgically induced menopause in 1998 its gotten worse.  I also developed horrible allergies in 1992.  Thats when my doctor thinks i developed lupus.  Its a puzzle.

Comment by Jules UK on November 5, 2013 at 6:01pm
Sorry, it was aconite, not arnica.
Comment by Mandy on November 5, 2013 at 5:13pm
Thanks Jules... Think mine is stress related too lol. I will let you know how I get on too x
Comment by Jules UK on November 5, 2013 at 4:46pm
I'm also intrigued by the idea of 'whacking' the scalp with something spikey..... Think I'll go shopping for a new hairbrush. X
Comment by Jules UK on November 5, 2013 at 4:45pm
Hi Mandy, I've tried homeopathy, but the therapist gave me tablets to calm my anxious personality! Which apparently is at the root of this problem. The latest tablets were arnica and should reverse the effects of shock. I can't say I'm convinced but I'm sure that my FFA was brought on by stress. Anyway, there's been no improvement. If there ever is, you'll all be first to know!! X
Comment by Mandy on November 5, 2013 at 4:18pm
Hi ladies, I'm new on here... Joined the weekend :0)
Saw my GP in May and was referred to the Derm... Due my biopsy the end of the month, but it know it FFA! Derm took me of Doxy that the GP had prescribed and changed from Betnovate to Dermovate... This burnt my head so back on Betnovate.
But I have been trying natural remedies... Oils from my aromatherapist which seem to help loads to reduce the redness. I am very interested in Homeopathy as they deal with the cause and where the problem began... Has anyone gone in this direction?
Comment by Celia on November 5, 2013 at 2:58pm

Annie - that is absolutely right - of that I am sure.  My system went into overdrive almost 3 years ago when I was battling with pneumonia.  I am certain that I absolutely know this was the cause. I was so ill and eventually had to shuffle around using a zimmer frame, so thin and weak.  3 weeks before all of that I was playing squash, swimming gyming and cycling.  How to correct it is the BIG question.  At the moment most of us are on various cocktails of treatment and we must accept that the medics have not come up with a 'cure' rather they are doing as much as they can by trying different meds - it is difficult to know whether meds are working or whether any changes in the condition would have happened anyway. In other words - 'shots in the dark'.  The only treatment I can be sure of is the topical kind - ie dermovate / clobetasol.  This does 'dampen down' the redness, but I don't really have a clue if hydroxychloroquine or any antibiotics work.  This frustrating situation is what we are all trying to get our heads around.  My hairloss continues despite treatment and this is the case for many of you.  Apologies for 'going on' a bit - sometimes monologues feel a bit self-indulgent but good to be able to sound off on this forum. x

 

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