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 Jules UK on September 17, 2013 at 4:00pm
Hi Kath, are you able to sleep I. Your hairpiece or must you remove it each night? I was told they could stay on for a few days but are they really that secure? Julie x
Comment by Kath UK on September 17, 2013 at 11:16am

Hi Pam - My hairpiece is like a little cap and mixes in with my own hair at the back and sides. It has three patches at the front (one in the middle of my forehead and one each side) which I use wig tape on and there are three little clips at the back which clip into my own hair. It's very secure and comfortable to wear once you get used to the idea. My own hair is cut in a short bob with a fringe which I brush back when I put on the hairpiece and which I can still brush forward so I can wear a headband or scarf if I want a rest from the hairpiece.
My hairpiece is from the Ellen Wille 'Hair Society' acrylic range and the piece is called 'Close'. My own hair is sort of mouse with some grey and some highlights and the hairpiece really matches in very well at the back and sides.
Don't be scared to give your wig a go - even just around the house. Think of it as a new beauty aid! Good luck with it. Hope this helps.

Comment by Pam on September 17, 2013 at 2:43am

Yes, I just need the confidence to take the plunge! Kath, how do you attach your hairpiece? Is it a front hairpiece or a full wig? Have you tried the stick on method?

Comment by Kath UK on September 16, 2013 at 5:30pm

Hi Debs - you look great in your wigs and you're right; nobody could think that you're wearing supplemental hair.
I too wear a lace front hairpiece and can honestly say that it looks as if it's my own hairline. (If I get brave I might post a photo of myself in it - but I'm a good deal older than you are and the camera isn't really my friend nowadays!)
I'd say to anyone thinking of getting a wig to go to a good wig shop, get professional advice and just give it a try.
Your eyebrow tattoos and the eyeliner are very successful too.

Comment by Debs on September 16, 2013 at 5:00am

Hi Ladies, I have just posted 2 photos of me in one of my wigs on our forum under the 'wearing wigs/hair pieces' thread. I decided to pop them on to try and help anyone that is worried about what a wig actually looks like on a real life person. The first photo is of me in very close-up wearing a wig (plus tattoed eyebrows and eyeliner) the second photo is me in a group of girlfriends - none of them are wearing wigs so you can 'contrast and compare' my wig with their natural hair and you can see there is no discernable difference. I hope if anyone thinking of trying supplemental hair this will help you in some small way. XXXX

Comment by Pam on September 15, 2013 at 4:59pm

I went to see my dermatologist this week and he has referred me to Dr Harries. My derm didn`t know about Dr Harries until I told him about his research interests, so it is only due to this group that this knowledge is getting spread around - so thanks everyone!

Comment by Pam on September 15, 2013 at 4:56pm

Thanks for the feedback. If anyone has tried using the stick on hairpieces do let me know. Your hairstyle sounds good Jules, and will hopefully mask the condition for some time. I have been carefully having my hair cut for several years, but it is now that it is hard to hide it, and I have started looking at wigs and hairpieces. I bought a nice wig from trendco, but so far have been too scared to wear it out!! I thought that maybe a front hairpiece would look less obvious. But the thought of having sticky tape on for weeks or days does seem rather nasty, so that`s why i wondered if anyone else had tried them?

Comment by Celia on September 15, 2013 at 4:46pm

Hi Jules - Dr Harries suggested I use Regaine as well as steroid and Plaquenil. Your hair do sounds good ! X

Comment by Jules UK on September 15, 2013 at 3:51pm
I was told about stick on hairpieces at bimingham's Trendco when first diagnosed last year. So far I haven't needed to enquire more about them and Pam, you've jogged my memory! After feeling desparate last week, I had my hair cut on Tuesday and my wonderful hairdresser has done a subtle makeover. By bringing more hair forward and re shaping the fringe, allowing long layers at sides to grow down so thickening the "veil" over the ears, I feel as though I can manage so much better! Sadly though, she said she wouldn't be happy styling a wig since she's had no experience and feels it's a specialised job.
I suspect I've been overdoing the Regaine and maybe that's why my hairloss has been quite marked. Is it OK to use steroid creams at the same time as Regaine?
Julie x
Comment by Pam on September 15, 2013 at 5:56am

Has anyone been advised to try stick on hair pieces? I saw a guy this week who works in a wig salon, and he recommended I try a natural hair strip that would stick along the front of my hairline where my natural hair has receded. He said he could match the colour, and it would be attached by a sticky tape which could stay on for weeks on end. I am a bit concerned that it could strip off any of my residual hair left underneath unless it is really in the right place. Has anyone tried using this system?

 

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