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 Celia on January 30, 2014 at 2:56pm

Polly - that is great to hear your eyebrow tattoo went well. We are hoping to have a get together here again in Bucks when the weather is better - I'll send out a choice of dates as before and we'll make a best fit plan.  Looking forward to seeing you then,

Very best wishes.

Comment by Polly UK on January 30, 2014 at 2:20pm
Thanks Pam for the information about your hairpiece. The way my hair is going (literally)I will be needing something soon and the back of my hair is very thick so I'm sure a wig would be hot and uncomfortable. I had my eyebrows tattooed this week and although they're very dark at the moment I'm already enjoying them!
Comment by Pam on January 30, 2014 at 12:00pm

My hairpiece is supposed to last about a year, but if my hair recedes considerably during that time it will have to be made larger I suppose! It is all one piece, just a strip that goes across my forehead and sides exactly where I have lost my own hair.

I had it done by Rob Davidson-Lamb at Barefaced Medical Aesthetics, 127 Promenade, Cheltenham, GL50 1NW tel 01242 222690. They have a website giving more information on what they do.

Comment by Jules UK on January 30, 2014 at 6:46am
Hi Pam, do you know how long your hairpiece might last before it needs replacing? Is it all one piece? I'm think of visiting your salon to see whether a couple of taped on hairpieces would be suitable for covering my side hairloss, after watching a couple of youtube videos. Am still hoping that the front hairline may never catch up with the sides!!
Comment by Jen on January 29, 2014 at 10:40am

Hi Pam,

I too wish that you can share some pics.  It is very inspiring that you are able to find a way to live fully with FFA.  I cannot go to your hair guy since I am in Canada but it would be great if I can show it to someone here who could probably help me design a hairpiece for the front and temple hairline.

Comment by Chrisy, MA USA on January 29, 2014 at 12:21am
Hey Pam!! I am very happy for you. Could you share with us where your hairstylist is from and the name?? Also, does it look like real hair??i wish you could share some pics wit us...
Comment by Caro UK on January 28, 2014 at 6:12pm

Well done Pam! I agree with everything you say, especially about mourning for your lost appearance and coming to terms with it.  For me that has been the most difficult journey and I too have had serious reservations about the various drug treatments but accepted that all I could do was try what was on offer but I could not bring back what was lost and had to move on.  In the winter it is easier to cope with - I can go out wearing a hat and no one will take a second glance and know why I am really wearing one.

Comment by MJ on January 28, 2014 at 3:01pm
Pam, thar sounds super! So encouraging to know that wonderful options exist down the road if necessary. MJ
Comment by Pam on January 28, 2014 at 2:48pm

Thanks for your supportive feedback and comments - it all helps! I must admit it is still early days in terms of wearing my hairpiece, as I had it in December, and so it is only a couple of months, and I haven`t yet had hot sticky days to contend with...it may feel itchy and intolerable then!

I went to a hair/skin place and saw a guy there who was brilliant - he was recommended to me, as he specialises in fitting hair pieces and extensions for both men and women. He drew a template of my forehead and then had the piece tailor made, with fine European wavy human hair identical in colour and texture to my own. The hair is threaded onto a breathable see through piece, and taped in place with breathable wig tape. I can shower and wash my hair normally, and keep in on all the time for sleeping, cycling, wearing hats etc. It acts just like normal hair, so I need to style it with a blowdryer after I have washed it. It needs to be taken off every month so the skin underneath can be thoroughly washed and cleaned, which I can either do myself (by soaking it off for about 15 minutes) or I can go back to him and he will do it for me. I am due a colour treatment next week, so he will do both my own hair and the hairpiece.

The compliments from friends have been amazing - I look like I used to about twenty years ago, and they all say my hair looks fantastic, what have I done! I have just told most of them that I have got a new hairdresser, and had some  extensions put in as I wanted a bit more volume!

The guy who did it is genuinely good, and I have passed on details to Debs as she is compiling a list of recommended people for hairpieces and wigs.

Comment by sallylwess on January 25, 2014 at 10:20pm

I also am with you Pam.  It has been a journey, and it has taken some time, but I can say I have made peace, for the most part, with having FFA.  I am also trying to just live life in the most healthy way I can.  I know I can't reverse what damage has been done, and I will have to adapt by wearing a wig at some point.  For now, when I am getting ready to go out, I  just try to style what hair I have left, not fret over what is gone, and get on with my day.  I am also drawing on my eyebrows.  Who knew I would have to become an artist?

 

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