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 Alice on September 7, 2014 at 3:56pm

Marian, I had a hysterectomy without removal of the ovaries, few months before I noticed my hair loss. I've often wondered if there was any correlation. I haven't had any surgery since then, though.

Comment by Marian on September 7, 2014 at 12:44am
Has anyone had surgery and if yes did it affect your FFA?
Comment by Meme on September 5, 2014 at 9:08am

All of those dates are fine for me. x

Comment by Jules UK on September 5, 2014 at 3:53am
Sorry, Celia, we're on holiday in Spain that weekend. Next time! X
Comment by Celia on September 5, 2014 at 2:34am

Ladies - a few possible dates for a get together - 25/26/27 September - please late me know which of these dates you are free on then we'll go for the maximum number of people - OK ? I will email directions if you have not got them from last time. X

Comment by Debs on September 4, 2014 at 4:44pm
Polly, yes I had episcleritis diagnosed back in June. Used steroid drops in my eye for 28 days. I am seeing a medical herbalist now to get extra anti inflammatory herbs in a tincture. I am certain the FFA and episcleritis are linked as both are unflammation in the body and cause is unknown.
Comment by Meme on September 4, 2014 at 2:05pm

Hello Norfolk girl

 

I am in Suffolk so if you need a lift just let me know.

Comment by Annie on September 4, 2014 at 10:31am

Hi all,

I just wanted to update everyone.  I had my annual eye exam yesterday.  It's been 14 months since I started Plaquenil, and my eye doctor says he can see absolutely no adverse side effects to date.  I wish I could say positively that the Plaquenil is helping with the hair loss, but it's hard to know where I'd be if I weren't taking it.     

Comment by Polly UK on September 3, 2014 at 2:30pm
Hi C, I'd love to meet up again, I too find it helps talking to people who understand. However we're away for the last 2 weeks of September and in the middle of October so I may have to miss this time.
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I went to the eye clinic yesterday because I've had a pink/red eye for more than a month and now on Steroid eye drops and something to lower the pressure caused by the inflammation. I think Debs posted something similar a few weeks ago. I'm sure it's connected as I have recently been suffering spotty blotchy facial skin. I have been taking one Hydroxy instead of two for last 2 months because of the possible side effect of dark skin pigmentation and seeing derm next week to check if it's made any difference. It's definitely not as dark now - I look like I've washed my neck now;) and although my hair is still falling out I don't think it's receded further.
I've been enjoying the summer and tried to forget about FFA but the recent eye and skin problems have made me focus on it more.
I've been mainly gluten free since March and feel better for that and still taking turmeric extra, biotin, zinc, D3 and a multivitamin for the immune system.
I think a course of steroids would help me right now as I inhale them daily for asthma, snort it for rhinitis and blocked ears and now eye drops... does anyone else on here have those things in common?

Polly
Comment by Norfolk Girl on September 3, 2014 at 1:23pm
I'd be interested but it may be tricky from North Norfolk!
 

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