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: Nov 25, 2024

Discussion Forum

Food Allergy Testing question

Started by NorthCarolinaMama. Last reply by lordiron Nov 25, 2024. 10 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

CARF Conference 2018 Notes

Started by CurlyK. Last reply by kevinsstelly Jul 14, 2024. 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

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Comment by Meme on May 23, 2014 at 11:44am

Hello everyone, Iam sorry for not replying earlier to you MJ, I have been away.

Yes I have had FFA for 10 years now. I suppose I have lost about one and a half inches from one side of my head to the other. So I suppose you could say it has gone slowly. So slowly that friends and work colleagues that see me every day haven’t really noticed a problem until recently. I do wear my hair with a side parting and flick  it over my forehead, which works to a point.

I find that the loss goes in phases, but I cannot say it has ever been in remission.

I met Pam earlier this year and I can confirm being absolutely staggered at her hairpiece. You really could not tell it wasn’t her normal hair. My daughter thinks its time for me to face the next phase and contact Pam’s hairdresser, which I have promised myself I will do this summer.

Best wishes to all

lying

Comment by Marian on May 23, 2014 at 11:03am
Thanks for being the hair piece pioneer for us. I am feeling like I need to be looking down that route ...soon. Would it be possible for you to take a couple of pics even just of the piece itself if you are uncomfortable with one of you wearing it. Jen I am in Canada too and am thinking of calling compassionate beauty which provides services to cancer patients to see if they can help. I am in Calgary where are you situated?
Comment by Pam on May 23, 2014 at 6:33am

It should last about a year, so far I have had it for six months and all is OK. I have had my hair cut and coloured, along with the hairpiece, and its honestly impossible to see the difference between my own hair and the piece. I need to comb it out slightly more carefully after I have washed it, and use a conditioner to stop it tangling up. Just like you would use anyway really. It is actually so nice to have some more hair to play with, I can use heated tongs and blow dry it in waves!

The edges are not visible, but if I scraped my hair back then they might be visible to the trained eye!  I just think of it as my own, and no different from other cosmetic enhancements such as hair extensions, breast implants or botox - just a great beauty aid to make me look a lot better and feel good about myself!

Comment by Jules UK on May 22, 2014 at 5:17pm
It should last about a year apparently. So a bit like the eyebrow tattoos, an annual service is required! But I fear I may need a more extensive hairpiece by then. Sadly. X
Comment by PamW San Diego, CA, USA on May 22, 2014 at 5:03pm
Jules and Pam, how long does the hair last?
Comment by Jules UK on May 22, 2014 at 5:00pm
Hi, I can't reply regularly at the moment since there's no wifi in the cottage we're staying at.
My hairpieces need some fine-tuning. For me, I wonder whether synthetic would be better than human hair since my own hair is quite fine and silky. Also, the positioning and shape is not quite right but I can go back to a Rob to sort that out.
I can't stress enough how much this has helped both appeance and confidence. I no longer wake in the morning and instantly reach to cover my bald bits!
I have a roll of wig tape to refresh when necessary, but apparently, there's a breathable wound dressing that allows the hairpiece to stay in place for weeks. I really don't know it's there! X
Comment by Jen on May 22, 2014 at 4:30pm

Hi Pam,

Thanks for your comment. You have had your pieces for a few months now so I am happy that you have gotten accustomed. Are the edges (here they meet your face) invisible or visible? Can you comb your hair back and have a natural look? I live in Canada and I am not sure where I can get a service like what you and Jules were able to access.

Comment by Pam on May 22, 2014 at 4:21pm

I am still very pleased with my hair pieces, and have got used to them. They have really helped my confidence a lot. Just had a photo taken on a windy ferry to Calais, and it was wonderful not worrying about bald sides and hairline!!

Comment by Jen on May 22, 2014 at 3:58pm

Hi Jules,

Thank you for letting the group know about the hairpieces. I was thinking of you only yesterday and wondering how you were doing with it. You must have heard me thinking.  How do you think the piece would have worked if it was placed in a more conspicuous place. You mentioned that you still comb your hair over the piece. My hair loss is at the temples mostly with a bit at the top.

Comment by Jules UK on May 22, 2014 at 2:28pm
Hi all, thought I'd let you know about my new hairpieces. I'm "lucky" in that my hairloss so far has been from above my ears mainly so I can still cover it with my own hair. I've had made 2 pieces that fit onto the bald patches. From Pam's hairdresser in Cheltenham they stay wonderfully secure and can be washed and dried. I plan on leaving them in place until I see my hairdresser in June. They have made a huge difference to me! I no longer feel like I'm hiding something, even though I still am... They tend to be frizzy because of course there are no natural oils, so I apply Boots Botanics serum which tames them. I call them my spaniel's ears!
Interesting about Elizabeth I. But I think her hairloss may have been connected to using lead makeup. Still, if only we could start a similar fashion trend with high foreheads!
Best wishes from rainy Cornwall. X
 

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