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: 602
Latest Activity: Jul 14

Discussion Forum

CARF Conference 2018 Notes

Started by CurlyK. Last reply by kevinsstelly Jul 14. 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

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

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Comment by PamW San Diego, CA, USA on November 8, 2012 at 5:49pm

I have red spots between my eyebrows - on the bridge of my nose. CJ is it only on the face? I think I have a rash on my arms sometimes.

Comment by PamW San Diego, CA, USA on November 8, 2012 at 5:48pm

Comment by Heidi Short UK on November 8, 2012 at 3:46pm

Funny you should say that CJ, when you look at my forehead under a light it looks as if I have got a rash under my skin. I wandered if it was to do with FFA, I was going to ask my derm next visit. Did you find any thing else interesting about ffa?

Comment by CJ- Christine from Ottawa Canada on November 8, 2012 at 2:01pm

HI All,
I learned at the Skin Matters conference that FFA can cause 'bumpy skin' or bumps on the face. I have noticed that my skin along the jaw line had changed texture over the last year and I assumed it was age related but apparently it is something often seen in FFA. Its kind of crepe- like with bumps that look like very small emerging pimples that don't go on to become pimples... hard to describe really. anyone else have this?

Comment by KarenGinny - Iowa, US on November 8, 2012 at 1:33pm

I've been using Neutrogena T-gel shampoo for scalp irritation for about a year now. I've also tried Nioxin shampoo and conditioner but I use the t-gel more since it is less expensive. It seems to help control the itching and irritation pretty well. - Karen

Comment by Debs on November 8, 2012 at 2:37am

Morning Liz, now you have told me you have good results with Nizoral shampoo I will definately give it a go. Thanks, popping off to Tesco shortly to stock up.. XXX

Comment by Liz on November 7, 2012 at 4:52pm

Hi Debs. I've used Nizoral shampoo before and it's fantastic for scalp iritation. I have used it a number of times of the years and it's always worked better than any prescribed hair treatments I've had :o)

Comment by Debs on November 7, 2012 at 3:23pm

Hello Ladies, I have found some other FFA folk on a webisite in the UK, the alopecia UK forum. I have asked a few of them what treatment they have and if it is working... One lady kindly told me she uses shampoos to help calm down inflammation; NIZORAL shampoo that is about £6, NIOXIN conditioner and sometimes another shampoo called POLYTAR. I have only just got this info so I can't say what they are like but it is a cheap option to try, I know it isn't a cure but if it can help control the inflammation it might be worth having a go.

Comment by Debs on November 7, 2012 at 4:13am

my eyebrows are tattooed on. I had them done last November, so they have lasted a year and the colour is still good. I have a tiny bit of eyebrow hair left but had to always use a pencil to fill them in. It did not hurt. I think it definately is worth doing. For any ladies in the UK there is a clinic in Chertsey, Surrey that provides this service, I did not know about it last year when I had mine done but they do a lot of work with ladies that have alopecia.. If anyone would like their info I have kept the details. XXX

Comment by Debs on November 7, 2012 at 4:08am

Ladies I have spent the past year trawling through wig websites and waatching ladies on YouTube putting on wigs and discussing all things 'wig'. I am not of course an expert as I have never needed to wear supplemental hair before. But, the thing I have learnt is that the same as clothes sizing different wig manufacturers have slightly different measurements for their wigs. My head is too big for a Raquel Welch wig - I bought one, it was lovely but just too tight, however the Jon Renau wigs come up a bit bigger and they fit my head nicely. I also bought a very cheap wig for about USD60.00 and it was rubbish, I just threw it away. The general opinion amongst wig wearers seems to be that a lace front gives you a natural appearance - so that is the type I am going for. It looks like your own hair is growing out of your scalp, also lots of celebs wearing them for fashion, so even if somebody did think it was a wig you can pass them off as a fashion statement ie. Beyonce wears lace wigs and so do lots of young female singers. So, the natural parting is a lace front wig. I don't use glue or tape as the good quality brands like Jon Reanu, Raquel Welch, Amore etc.. are fitted with straps inside the wig you can tighten and as we all have our own hair you can just use a few hair clips for added security. My friend Michelle knew that I was wearing a wig and she kept saying that she could see my own hair at the front - that wasn't my hair it was the lace front... I have written a letter of complaint to my GP practice about the insensitive way he told me last December I have alopecia and the fact that he didn't off-set the bad news with any self-help info like this website and others for alopecians, also he gave no info on getting wigs on the NHS etc.. I don't expect him to apologise, he is a very arrogant guy but I hope he will be more gentle in future with any other ladies with hair loss. Have a great day ladies and thank you all so much for your support on this site, you are all a life-saver for me. XXXX

 

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