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 April on August 15, 2013 at 7:13pm

Hi everyone! Pam, congrats on your new wig: ) I have a question for all of you, have any of you tried Nioxin shampoo/conditioner? My nurse who does my xtrac treatments recommended it to me, he said it helps promote a healthy scalp. I looked it up online and it is a bit expensive and contains a lot of chemicals, sulfates, parabens, etc. Things I generally stay away from. Just wondering if anyone has tried it and if it is worth it. It seems the main ingredient in Nioxin is peppermint oil. Would tea tree oil have the same effect? Thanks!!

Comment by Kath UK on August 15, 2013 at 6:57pm

Pam - I'm delighted that you feel your new hair is a success. Enjoy! I'm sure you look fabulous.
Liz - I'm with you about telling people and I've found all my friends and family are supportive and interested in my hair pieces. Of course I still wish I didn't have FFA but I refuse to let it dominate my life. I love my new look and the confidence it's giving me and I'm so happy you are feeling positive and upbeat about your new hair. Good on you!

Comment by Liz on August 15, 2013 at 6:12pm

I tell all my friends about my hairloss and that way, in a way, they are going through this with me. People can't be supportive if they don't know what's going on. My friends and family have tried my wig on and it's quite a feature in my home, even when I'm not wearing it!
If somebody doesn't understand about hairloss that's 'thier' problem and not ours...Embrace life and wigs! I have better hair with my wig than I ever did with my own hair :o) xx

Comment by Pam on August 15, 2013 at 5:54pm

Celia - thank you for such a quick response! Did you have a permanent tattoo on your brows, or semi-permanent? Do you choose a colour?
I will see how I get on with my wig - like you, I haven`t really talked about my hair worries, as have managed to cover it up pretty well, but over the last winter it has gradually got more obvious, and I have become much more self conscious about people noticing it. I have lost the hair around my ears, and it looks very thin and scraggy! I thought about having a topper or hairpiece, but it seems harder to fix when the hairloss is like mine, ie front hairline. Going to the wig shop does make one realise that there are people far worse off though, with life-threatening cancer, and having to go through the terrible treatment that entails.
I just feel so depressed that there is so little really effective treatment for auto immune diseases and alopecia in particular. It does have a profound effect on my enjoyment of life at the moment, and I have got to learn to live with it!
I live in the South West, but can get to the London area easily.

Comment by Celia on August 15, 2013 at 5:37pm

Pam - not sure where you live, but I can certainly recommend tattooing. I went to Chertsey, Debs having given me the name of a brilliant person who makes the eyebrows look so real. Nobody here knows about The Problem (apart from family) and there have been no comments. Belinda Hayle does the brows in strokes that makes them look totally convincing as eyebrows. I always us a high factor suncream on them daily to help prevent fading - I had them done in December 2012 and my Xmas present to me may be a 'top up'.
The injections were on one occasion VERY painful and remained so for hours after. I have veins now running vertically down my forehead as a result and a ridge along the hairline as well as a 'trough' vertical down the middle of my forehead. My fringe covers it all (except on windy days !). Sometimes I cannot believe this has happened to me, going from normal to THIS seems unreal some days. We just must hope that there may be hope of restoration one day. Still cannot bear the thought of a wig. Well done though, Pam - quite a few of us have gone that route and really are making the best of it. Good luck when you 'go public' ! XXX

Comment by Pam on August 15, 2013 at 5:02pm

Took the plunge today and got a wig! It is synthetic hair, but looks pretty amazing, and both husband and daughter think it is great! I haven`t worn it in public yet...
Next on my agenda is doing something about my non-existent eyebrows. I thought that maybe a semi-permanent makeup would be better than a full tattoo? Any advice?

Comment by Jules UK on August 15, 2013 at 2:13pm
Brenda, I really feel for you! I haven't had injections because no one here reported any improvement from having them. They may not be responsible for the increased hairloss - FFA seems to have spurts every now and then. I too am losing lots at the moment and it does make me so, so sad. Not depressed nor self pitying, just really sad. And a good cry is such a release. It helps to rebuild your strength to keep facing it. Keep talking to us here! XXX
Comment by Brenda, IL US on August 15, 2013 at 1:40pm

Has anyone experienced increased hair loss after they've started injections? These past two months have been a disappointment to say the least. After every shampoo there's a handful of hair in the drain. Just vacuumed my bedroom and bath and i have two handfuls of hair. I see my dermatologist next week and i hope she has some answers. It's about a six hour drive round trip so i just hope i'm getting some benefit. Time for a good cry. I haven't given into it since this started in 2010.

Comment by Celia on August 15, 2013 at 9:09am

Hl Mary and welcome - my heart goes out to you - we have all been there and it is horrible and such a shock.
Advice from me would be tell nobody initially - then at least if you need a wig then you can get away with it without people who do not understand , being perhaps more sympathetic than you can handle. Find a good dermatologist who has experience. Read as much as you can on this site - there is a lot of info here. I too am in my sixties.... there are ladies on this site who are half my age and I feel so deeply for them. Try to think positive when the dust settles (I am not always very good at doing that !) Have a good cry, mourn a little and then get cracking with a good diet, plenty of exercise, try turmeric capsules from the health food shop - some of us have had reduced inflammation with this - we think - can never be sure what is working really.
Where do you live ? Keep communicating - nobody minds if you 'sound off' on here as we are all in the same boat - it's still afloat and we aim to keep it that way. XXX

Comment by Alice on August 15, 2013 at 8:53am

I haven't taken the Rogaine plunge yet but probably will start soon. I had good results on my brows with Elidel cream. It's by Rx only but a small sample tube will lasr for months. Does anyone else have itchy or tender brows?

 

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