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 MJ on May 24, 2014 at 7:16pm
Liz, i am interested in seeing pics. It is so good to hear that you are happy. It gives me comfort to know there are options down the road. If I put my email address in this post, will it be out on google as well? Is there a way to privately message you with it? MJ
Comment by Liz on May 24, 2014 at 6:30pm

Hi ladies. I have a clip on fringe, half wig and full wig. I am happy to send  before and after pictures to anyone who is interested in how they work, what they cover and how they look. I love my clip on hairpiece. For me it has changed my life and would recommend it. I no longer post pictures on here because once posted they show up in any google image search but I'm happy to email to anyone who is interested ;o) 

Comment by Jules UK on May 24, 2014 at 5:39pm
Hi Classical Anne (I love your name!). I felt exactly as you do about removing hair pieces / wigs at night. This is why I'm particularly grateful to Pam for finding Rob. My new hair is brilliant through sleep, washing and drying. I really am unaware that I'm wearing anything false. I just rub in a leave in hair serum before blow drying. I haven't yet removed it - I'll do that when my hairdresser next calls in June. But Rob said that the skin underneath should not look dry or wrinkled. Then I'll re-attach them with wig tape. The hairpieces stick to my smooth bald bits but as yet, I can cover them with my own hair so any small gaps don't matter. I hope you can sort out something similar. X
Comment by Classical Anne in NC mountains on May 24, 2014 at 10:50am

Questions about WIGS - I've been following the discussions and have 2 questions. I have not yet begun even looking for a wig, but these 2 thoughts pop up every time I think about it.

What is meant when anyone says 'it will last 6 months' [or whatever timing].  What exactly happens that tells you it's the end of that piece's useful life?

And something I've not  heard anyone mention: what does your head/hair look like when you remove it at night [your hair, not your head!].  Are you embarrassed to face your husband or partner?  I think from the very beginning my sadness was not so much for me and my hair as it was for my sweet husband, to wake up with an old balding lady.  He is very supportive, and would deny that it bothered him at all.  But  I think, of course he would at least inwardly wince.

Right now, my hair loss is not visibly significant, so I don't need a hairpiece.  But the texture of my hair has changed to the point that I'd probably look better in a wig than anything I'm able to do with my hair.

Comment by Marian on May 23, 2014 at 8:32pm
Rita
Yikes just checked. There goes my back up plan. We may have to go to England.
Comment by April on May 23, 2014 at 4:14pm

Pam, does this hairpiece stick to the head?  If so, would you have to shave off any stray hairs in order to apply it?  My hair loss is all right smack in the middle, front of my head.  Do you think a hairpiece would work for me?  Not to that stage yet, but just preparing myself.  Thanks!

Comment by Rita - Canada on May 23, 2014 at 3:38pm

May be a good idea to just check/enter the Continental Hair reviews, then choose

Continental Hair topper HerAlopecia.  Can't hurt to be aware of any pushy salespeople.

Comment by Marian on May 23, 2014 at 3:16pm
Jen, I would check out Continental Hair website. It looks like they do a lot of custom hair pieces. I will be in Toronto this summer and may try and get in for a consult but would really like to find somewhere closer. When I had my eyebrows done I flew to Vancouver for a particular person to do them but when you add flights and hotels every time you need a retouch or a hair piece adjustment it becomes really costly. If you do try them out let us know how it goes!
Comment by Jen on May 23, 2014 at 12:44pm

Marian I am in Toronto. Rita I went to Trade Secrets in the mall and was told to chop off my hair and purchase a wig. They did not seem interested in helping my specific situation. I purchased Jessica Simpson bangs as they recommended and it does not work for me. I think the best solution is Jules's and Pam's solution if I can find someone to replicate. It has been 4 years for me and I have lost about 1.5 inch at the sides and top and more around the ears. There is also a big patch between the nape of the neck and the right ear. I do not really worry about the last one because of the location.  Jules, I was thinking of you and how the piece was a bit dry. My natural hair is corkscrew curly and very dry. I have to put oil and leave in conditioner. I also wear a headband around the hairline to bed even before FFA. This way I do not rough up the hairline while I sleep and cause more frizz. This headband is useful now that I have ffa because I comb wisps of hair forward and place the hairband over them to keep them in place while I sleep. I also add dark eye shadow in strategic spots and pull the wisps over the eye shadow. Those are the tricks that I use that work for me right now. later on I may have to resort to more drastic measures. Thank you Jules and Pam for sharing and thank God for your hairdresser.

Comment by Rita - Canada on May 23, 2014 at 12:21pm

Pam, what would you call this hairpiece?  I called 2 wig salons asking them if they carry something for this condition and described the loss and was told a full wig sounds best.  I don't agree.  I purchased a full wig and rarely wear it finding it binding and was not that cheap $450.00 CA.  It does look good so only on special occasions.

 

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