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 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.

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.

 

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