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 Jen on June 3, 2014 at 8:30pm

Last comment was to be

Hi Rita

not Hi Kijijji. My fingers are faster than my brain. lol.

Comment by Jen on June 3, 2014 at 8:28pm

Hi Kijijji,

I saw a place in St Catherine's on Kijijji. They custom make partials according to their advertisements. When I called, they were trying to sell the whole wig.

Comment by Rita - Canada on June 3, 2014 at 7:18pm

Yes I called a place who advertises heavily on the radio for wigs called Gabi's and when I described my problem and that I just need a hairpiece that would cover that area, they merely pointed out that they have lots of wigs. Perhaps the person who answered was unaware if they have such.

Comment by Jen on June 3, 2014 at 5:59pm

Hi C,

Jules and Pam are in England and I live in Canada. I am looking to find someone who can do what they described but so far everyone is trying to make me buy a wig which is not necessary at this point. I still have quite a lot of good hair.

Jen 

Comment by Classical Anne in NC mountains on June 3, 2014 at 1:06pm

Something led me to investigate the Women's Hair Loss Project website.  It seems to be geared more toward AA and forms of alopecia that strike younger women.  But I want to encourage everyone to watch the video on the upper left of the home page, within the blog "Grace & Beauty Defined".  It's a beautiful, emotional, and inspiring video.  http://www.womenshairlossproject.com/

Comment by claire on June 3, 2014 at 11:12am

Hi Jules,

I would be very happy to help if you still need bodies.

All the best

Claire

Comment by Celia on June 3, 2014 at 4:55am

Jen - you may have read that several ladies have had hairpieces fitted that remain in place for a short period of time, throughout all activities.  Certainly Jules and Pam have had this done in the UK - not sure where you are but it's worth researching.  Good luck ! x

Comment by Jen on June 3, 2014 at 12:50am

Hi Irene,

I have lost about 1.5 inches at the sides, more around the ears and about .5 inches at the forehead. I have been pulling my curly hair forward while wet and keeping in place with bobby pins until dry. It stays that way. People say that I look different but cannot really figure out what has changed.  I am not sure how long I can continue to hide it though since the hairline keeps advancing.  I was thinking of getting the sides covered with strips of hair like maybe sideburns pieces. I am not so sure how it will look though.

Comment by PamW San Diego, CA, USA on June 3, 2014 at 12:49am
Hi, Irene. I know how you are feeling right now - you are not alone. There is an organization called CARF, and They can recommend a dermatologist in your area who is experienced with treating FFA. I wouldn't spend a lot of money on doctors who don't take insurance, because there are many doctors who will take insurance and who know how to treat us, or who is willing to find out. The CARF website has the protocol for treatment and a lot of answers to questions you may have. Our group is a lifesaver for finding out the latest information.

Try not to panic. I thought I was going to be bald in a few months and I am coming up to two years with the disease and I am still able to hide my hairloss. Everyday brings another woman to Celia's group. Hopefully everyday will bring us closer to a cure.
Comment by Irene on June 3, 2014 at 12:05am

Just diagnosed with ffa. I keep thinking I will wake up and it is a dream. I am in NJ and looking for a good doctor. I am seeing someone in NYC but hoping to find someone closer and who may take insurance. I have an appointment to get a hair piece or wig. Just looking for friends and advice. Thanks. Irene

 

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