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 Jules UK on January 24, 2013 at 2:05pm
It's been really interesting and thought provoking reading the recent posts. I mentioned the social class theory to hubby and he suggested that higher income means spending more on fancier hair products perhaps. This is what Dr Harries is looking into with his recent questionnaire, shampoos etc. although, in our poorer days, when the kids were young and we had a single income, I always bought supermarket budget hair stuff. This might have been when FFA was brewing. I wonder how far before we notice it's effects, it actually begins?
Celia, I'm so sorry to hear about your sister in law. She has a rough time ahead.
I hope we can arrange a meet up. I'll look into that conference in Durham too. Thanks, Debs.
Comment by Judy on January 24, 2013 at 1:36pm

I thought about that comment also - upper class women having it more often. Actually kept me awake. I was trying to figure out what the difference could be. My only idea was air travel, altitude or toxins? Maybe stress? Just guessing.
I think Karen's idea of lower income not being able to see a dermatologist is probably right. In my case I have Medicare but most of you in USA do not and it would be expensive to see a specialist.

Comment by KarenGinny - Iowa, US on January 24, 2013 at 10:29am

Hi Liz, you mentioned wispy bits of hair at the hairline - I have that. All along where my hairline starts I have a pencil thin strip of hair that is still there and still grows, from in front of my ears, temples to my forehead. I've left it there for the most part because I guess it helps me blend the rest of my hair in to it. Except I started shaving the very front of my hairline since it showed through my bangs that I tried to cover the bald areas with and looked funny. And of course that thin strip of hair keeps growing back, when just behind it is bare scalp that goes back about 1 1/2 inches all around. The rest of my hair is growing as usual except for a thin patch on my back right scalp. My eyebrows and lashes have stayed in good shape. I've also been taking Biotin when I remember but don't know if it's really doing anything. Someone mentioned this being a condition among middle to upper class women, and that may be, but I'll bet there are many lower income to poor women who have it but simply can't afford to see doctors or dermatologists and have it properly diagnosed, or figure it's just part of getting older. I think for men too it's more socially acceptable to be balding, whereas for women, we are supposed to have thick beautiful hair. ??

Comment by Debs on January 24, 2013 at 10:00am

For ladies in the UK
Saturday 12 October 2013, Alopecia Conference in Durham organised by Be Bold Alopecia Awareness, cost is £30.00 inc lunch and evening buffet. I have just booked myself a place. Looks like a great event to get info/support/advice

www.bebold.org.uk

Comment by Debs on January 24, 2013 at 9:57am

Rebecca I agree with you 100%. I really do have a strong gut feeling that FFA is not a rare condition as the medical profession thinks, it is just under reported. My first thoughts were that I was just losing hair because of my age (48 at onset) and I am certain that many other ladies think the same. I also know that going to see a Dr about hair loss is very upsetting and many people most likely put off going. I had a very unsympathetic response from my GP. I didn't know that guys get it but if they do then it would just be written off like you say as androgenetic hairloss.

Comment by Debs on January 24, 2013 at 3:54am

Hi Liz, It would be lovely to meet up, I am in Surrey but can of course drive to meet up with you.

I don't have any medical condtions, apart from FFA! I did start another thread 'other autoimmune related health problems' so I am keeping any watch for any other nasties happening in the future.

I don't have wispy bits at my former hairline. Last night whilst taking off my wig I accidently 'waxed' about half a centimetre of hair off my hairline. I was using wig tape for the 2nd time and I took my wig off, this left the wig tape on my head. I should have used my rubbing alcohol on a piece of cotton wool to remove the tape but I didn't bother and just pulled it off, thereby effectively waxing some of my remaining precious hair. It came out with no pain as it was already about to fall out. I found it quite funny as I am running about like a headless chicken trying to save hair and I go and wax myself! XXXXX

Comment by Liz on January 24, 2013 at 3:49am

I wonder if men do get it but dont think of it as anything other than going bald?

Comment by Debs on January 24, 2013 at 3:43am

Minnosotamom, Please do inform your derm that Black women (indeed females of all ethnic groups) get FFA. I am Black, Lace has already responded to you on this forum and I know of another Black British lady that has FFA. So out of a total of 32 females that I now of with FFA - 3 of us are Black. This condition is exclusive to women that is about all that can be said of it and age appears to be a factor. Welcome to the group, Deb xxx

Comment by Liz on January 24, 2013 at 2:51am

Good morning everyone :o) I hope everyone has a lovely morning, evening and night. I'm off to work in a minute. Can I ask 2 questions. 1. Do those who have whispy bits of hair where thier hairline once was, shave those bits off? And how long do they take to grow back and does it irritate that part of the scalp? And also, Who else suffers from allergies? I have excema, hayfever, allergic rhinitis and asthma. xx

Comment by Judy on January 23, 2013 at 11:11pm

Another question. I'm going to try Biotin - does anyone else take it? I know these things can be false hopes, but why not?

 

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