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: Jun 3

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 AnnieMay on March 19, 2018 at 12:17pm

Afraid- So true. I get most of my information here. Lately for me everyday presents a new and confusing symptom (my scalp feels like it's on fire) with no real understanding if it's a side effect of the steroids or tacrolimus or if it's FFA and no clear path to resolving any of it. Totally agree that dermatologists should be looking here to learn more about what we face everyday!

And Lynn555- please update us. I'm having the same issue right now

Comment by Afraid on March 19, 2018 at 10:46am

Wouldn’t it be marvellous if a dermatologist undertook to carry out an analysis of all themes that emerge on this FFA forum?!  There are so many  similarities and of course individual differences.  Surely the anecdotal information is crucial to a deepening understanding of the difficulties we face with this condition and the seemingly global scattergun approach to intervention!  

Comment by Lynn555 on March 19, 2018 at 10:45am

Hey guys, there has been a change in my scalp. I now have raised pimple and bumps. I'm going to the walk in clinic as soon as they open. It was really burning and itching. I want it to simply be folliculitis but I think it is scarring alopecia. My picture matches another online for this. Here is my scalp. My husband took this last night with his macro camera. IMG_8823.jpg

Comment by Pascal on March 19, 2018 at 10:13am

Why can't this comment wall be organized by themes? This is so confusing...

Comment by Pascal on March 19, 2018 at 10:12am

Adie503 I think as you do; it has to be gut related; I have celiac disease, and more than 15 years of serious problems related to gluten consumption. In my case, everything started with celiac disease which unfortunately was undiagnosed for 15 years :(

Comment by Pascal on March 19, 2018 at 10:09am

Liz Lov thank you for your suggestion, I'll find and read Medical Medium and Thyroid Healing by Anthony William; Jess I also have rosacea and also Hashimoto's and celiac disease. 

Comment by Jess on March 19, 2018 at 2:14am

AnnieMay, a study was just published that reports a link between FFA and rosacea. I also have rosacea. It was at its worst about 18 months ago. My cheeks were flushing and super hot for no reason almost every evening. It seemed to have calmed down for a while but is now acting up again. Here's the link to abstract. http://www.jaad.org/article/S0190-9622(17)32328-9/fulltext

Comment by Adie503 on March 18, 2018 at 9:36am

@Pascal  the hair I lost on my forehead has not grown back.i don't think it will. That skin is shiny and thin. So not all of it has grown back but I really believe if I don't stress and continue with this diet I can save the hair I do have. When first diagnosed I saw strands of my hair everywhere, not anymore. No one can tell me that this disease is not "gut" related. I'm no longer bloated, I don't feel lethargic after eating, I don't have a cotton brain sensation, all things I would feel after eating carbs, gluten and sweets. 

Comment by Pascal on March 18, 2018 at 5:12am

Adie503 your beforeand after pictures are amazing; Did your hair grow back? Is this possible with FFA?

Comment by pauliegirl on March 18, 2018 at 1:45am

 It’s late here in Chicago and I had decided to start dictating these posts versus typing on my phone. So I hope that the typos/AutoCorrects that I didn’t proof for have, if nothing else, given you a laugh :-) I do actually just have two arms ;-) and menopause has been a hell of a lot longer than a minute  LOL! Good night all! 

 

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