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: 601
Latest Activity: Jul 8, 2023

Discussion Forum

Botox and FFA

Started by 2Dachshunds. Last reply by Shawnaynay Jul 8, 2023. 18 Replies

Hi Everyone: I remember there is a women on here who connected Botox to FFA. I was given the article, Frontal Alopecia after Repeated BotulinumToxin Type A Injections for Forehead Wrinkles:An Underestimated Entity?Antonino Di Pietro a Bianca Maria…Continue

Tags: Botox, FFA

Trying a new approach with CBD oil...

Started by Robin. Last reply by anettemandell Apr 20, 2023. 31 Replies

Hello All, I am venturing into new territory. It just dawned on me that a good experiment would be to try a medical grade CBD oil tincture on my hairline and see if it affects the redness. CBD is the nonpsychoactive part of marijuana that is being…Continue

Man with FFA. New member.

Started by Thomas. Last reply by Thomas Nov 23, 2022. 27 Replies

Hello,Thought I’d share my experience, as one of the few men with FFA, in the hope that it will be useful to others. It’s possible that the condition progresses and responds differently in men. I’m 40, live in London and otherwise healthy.I first…Continue

Dermatologists who specialize in alopecia?

Started by NorthCarolinaMama. Last reply by tcasal Nov 2, 2022. 1 Reply

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

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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?

Comment by April on September 14, 2013 at 8:21pm
Hey ladies! For anyone who has found that rogaine helped their condition, do you use it in conjunction with other treatments? Also, for those of you who have used clobetasol topically long term, have you experienced any side effects from this medication?
Thanks!
Comment by Annie on September 13, 2013 at 10:17am

Christiekd, thanks for the information regarding your flare-up. I also lost a family member in August and wondered if that might affect my progress. My scalp feels better this morning.
Sam, I was also nervous about shedding eyebrows with Rogaine, but decided to try it anyway. I did shed a few, but they were quickly replaced. Within a month my eyebrows were thicker than they had been in years. I should mention that my eyebrows have not been affected by the FFA yet. I've never been blessed with thick eyebrows, and they have thinned over the years. You can find instructions online that tell how you should use Rogaine on eyebrows.

 

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