Frontal Fibrosing Alopecia


Frontal Fibrosing Alopecia

This is specifically for frontal fibrosing alopecia sufferers. To share information and support each other.

Location: Dubai UAE
Members: 385
Latest Activity: 2 hours ago

Discussion Forum

When did/do you decide that you need helper hair?

Started by Minter. Last reply by lynetter 2 hours ago. 10 Replies

Just curious as to those of you who wear "helper hair" or are contemplating it- at one point in this FFA hair loss did you decide to go for the wigs/hair pieces/etc.,,? Some days I look at my hair and think, I'm just being vain and silly, why I am…Continue

FFA burnout stories

Started by Kathy in Denver. Last reply by Joy on Saturday. 21 Replies

I am still hoping to gather, in a dedicated place, stories of burnout. My first attempt was a separate group but it has got no response so I am wondering if a discussion might be better as this is such a stong group. If you have a burnout story or…Continue

Tags: stories, out, Burn

Itchy thighs

Started by Jacq. Last reply by Minter Feb 14. 21 Replies

Hello fellow FFA suffersSigh, the tops of my thighs are irritated.  I can't wear jeans/pants because of the prickly feeling on my thighs. Anything tight fitting. Just like on my head when I wear a hat.  Maybe I am losing hair there?  It's hard to…Continue


Started by mc. Last reply by MnM Feb 12. 6 Replies

Hello and happy new year to all! I noticed my eyebrows fading about 7 years ago and went to dermatologist who showed me hair loss in the temples as well. (never even took notice) I'm using Plaquenil and Taculimus topical for 8 months. I went through…Continue

Comment Wall


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Comment by Claire Julia 3 hours ago
In reply to Minter and Lo, here goes. Yes it is tapped at the front. I've not done it yet myself but plan to wash my hair tomorrow so I will report back then. It does itch a bit but then my hair also itched before the system was fitted. They pull your own hair through a net like system and then attach the hair to that. So even people with very fine hair will be able to have it done. The people at LE were very thoughtful and attentive. However I feel I have more hair added than I actually needed. That's why I feel a bit self conscious as my hair looks dramatically different. It is becoming more comfortable by the day or maybe I am just getting used to it.
Comment by CurlyK 21 hours ago
February 28 is Rare Disease Day. Is anyone doing anything special to recognize this day?
Comment by Lo yesterday
Claire Julia... is it taped in the front? I'm curious how it "attaches" if there isn't enough hair in the front/top. Thanks! And I hope you get used to the system so I! I'm sure it looks absolutely lovely. I'd love to see pics but totally understand if you don't want to share.
Comment by Minter yesterday

Claire Julia, Thanks for sharing- I bet it will take some time to get used to having this system, I hope it will be sooner then later for you! How was it getting it done? So how does it feel? Is it itchy or anything? What was it like to wash your hair and dry/style it? Sorry for all the questions- I am actually going this week to L. E.'s and am full of questions about it all!

Comment by Claire Julia yesterday
Well I have had my hair done now and been for the first wash. I have to say it is taking a little while to get used to it. Everyone says it looks good but I feel a little self conscious. I am sure I will get used to it.
Comment by Sad in chicago yesterday

I have been wearing toppers for three years now.  It is a learning process.  I would recommend getting one now, as even tho you may feel there are some days that are OK, there are many others that are not, and wearing the topper helps enormously with confidence.  Why have any days that you don't feel well about yourself?  Having said that, here is my story.  I started with a small human hair piece that clipped in only and blended with my cut.  Loved it, and wore it for almost two years until it became apparent that my loss was increasing.  First we added a tape to the front where the hairline was receding and for a while that worked, but eventually, needed to move on to another larger piece that had a larger skull cap and was created specifically to fit the loss.  Expensive?  Yes.  Each piece was about $900.  And in between I did get a synthetic for summer, outside, poolside, etc.  Don't wear it much, but have it for emergencies.  The thing about getting one sooner than later, is that as the loss increases, and unfortunately, it does, you want the addition of the newer pieces to be seamless to how you look now.  Only way to accomplish that is by starting with a purchase.  I do not "shave" or make space to glue anything on.  I use tape only for the front area and clip in the rest.  It requires maintenance, learning how to take care, wash and style the piece, fixing and replacing clips here and there, and buying tape, BUT if you find a reputable and helpful stylist who specializes in hair loss you will adjust and learn as you go along and they should be there to help you.

Also, I recently had my eyebrows tatooted "permenant make up" and am very happy with this decision.  

Comment by Minter on February 12, 2017 at 8:30pm

Ohhhhh I am very excited for you Claire Julia! Yes, please give a report, I'm sure all will go very well for you on Tuesday :-)

Comment by Claire Julia on February 12, 2017 at 3:05am
I'm getting the interlace system on Tuesday. Excited but also slightly anxious. Will report back.
Comment by Minter on February 11, 2017 at 7:38pm

Hi Bonneygirlm,  that is the dilemma with this FFA, how to hide the missing front hairline- toppers are great for the thinning on the top, if you do have thinning, but that doesn't solve the problem of the front. I am in the midst of looking at options, if you look at the thread Extensions yay or nay, maybe you'll find some info there to help you.  Some people can get tape in pieces for the hairline, I am looking into the intra lace system- in a couple of weeks I have the consultation and will report back on how it goes-

Comment by Bonneygirlrn on February 11, 2017 at 5:38pm
I have slowly progressing FFA, diagnosed around 5 years ago but started probably 7 years ago. I have tried different haircuts to hide the loss of my hairline and luckily I had a low hairline to start. Now I'm at the point where I need to get a hairpiece or extensions of some kind. So hard when it's the front of your hair, how can it look natural?

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