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: 268
Latest Activity: 17 hours ago

Discussion Forum

FFA itching

Started by Mildred. Last reply by Jacq yesterday. 10 Replies

I have had severe itching with my FFA, including in places where I don't have hair any more and places where I never had hair.  Is the itching all related to FFA or LLP?  I understand that in hair zones this means there is inflammation. Does anyone…Continue

New to FFA and to this forum

Started by SJC. Last reply by PamW San Diego, CA, USA on Saturday. 5 Replies

Hi Everyone,I'm not sure where to begin...I guess at the beginning!  I was diagnosed with FFA in April 2015 and a biopsy confirmed it a couple weeks later.  I believe my journey down this road started a couple of years ago, with my eyebrow and leg…Continue

Because of the Lack of studies for Frontal Fibrosing Alopecia I made a Chart here

Started by Dragon&Fox. Last reply by Dyners on Friday. 54 Replies

My Doctor says it's almost guaranteed that there will be no studies for the disease FFA because there's NO money in it.  If there are studies that INCLUDE FFA it's because FFA has to do with hair loss which is an issue that brings in a great deal of…Continue

CARF ...interesting info

Started by momto1. Last reply by Annie on Friday. 18 Replies

So I was reading through some recent posts in this forum and came across CARF. Decided to look it up online. There's a clinical trial For FFA. You know the funny thing?? My last derm is one of the physicians working on the trial! The one I had a…Continue

Comment Wall


You need to be a member of Frontal Fibrosing Alopecia to add comments!

Comment by Classical Anne in NC mountains 17 hours ago

Some good discussions!  Anne Louise, I really appreciate the hope contained in your NAD+ article. And kudos to LoriO for finding it in a supplement.  Sandy, you make an important point in distinguishing male/female "pattern baldness" from FFA -- if your Dad's new hair loss leaves a full head of hair at the crown and back, that does sound like FFA.  

For me, the problem with clip-in hairpieces is that I have both female pattern baldness as well as FFA.  I got a really pretty piece and was excited to have my stylist tailor it to my haircut.  But she was complete unable to attach it with its little comb-like clips to the top of my head because my hair there is now so thin it absolutely would not hold.  I now just use it occasionally by holding it [still rather loosely] with large barrettes and covering them with a wide headband or scarf band.  A lot of effort for minimal improvement.  Still, it's only hair [well, lack of] and I can certainly live with that.  And I am very pleased with 2 wigs I now wear to most outings.

I wanted to add to the HLA-B27 issue that I brought up.  My original diagnosing Rheumatologist, some 20+ years ago, put it in layman's terms for me.  He drew a little stick figure body and pointed out the areas where the linings of organs could deteriorate by autoimmune self-destruction.  At the time, I had only Fibromyalgia, and a problem with one shoulder which surgery corrected.  But I held on to his little drawing.  Since then, the linings of my bladder and my colon have been significantly damaged, and are chronically painful, though they are managed with exorbitant medications.  My other autoimmune issues are much less significant, and probably not an effect of the HLA-B27 syndrome.  But I'm wondering now if it might apply to FFA -- isn't the follicle sheath what is dying, causing the hair to fall out?  Might that be considered a "lining"?

Sorry my posts tend to be so long.  But isn't it nice to sort of think out loud [in print] among friends?

Comment by LoriO yesterday

When there was some discussion of Vitamin A playing a role in FFA, (can't be too low, can't be too high) I asked my Dr. if I could be tested just because I was curious.  Just got the results back and I am low on Vitamin A.  Has anyone else had this tested?

Comment by Let's Solve This yesterday
Interesting article, Anne Louise! I'm hoping and dreaming right along with you! I was diagnosed with FFA on September 1st after seeing my family doctor and 3 different dermatologists. I have an appointment on Monday with Dr. Olsen at Duke so that I can participate in the Duke FFA study. We have to figure this out for all of us and so that other women won't have to deal with this disease. We have so much to contribute in this world and we don't need to be distracted for one minute by this hair thing!
Comment by LoriO yesterday

Anne Louise, that is the most encouraging thing I've read so far!  I went down a rabbit hole reading about NAD+.  

I think I might just try this stuff called Basis made by Elysium Health. (for some reason I can't get this to be a live link.)

Comment by MJ yesterday
I think the genetic component is autoimmune disorders, not baldness. I come from a long line of people with full hair well into their 80's.
Comment by Kristen P yesterday

It's not just post-menopausal Sad in Chicago. This started in me in my early 30s and there are no indications that I'm in/approaching menopause. There are several young people on this forum. It may have started showing in post-menopausal women, but I think it's reach is growing. 

Comment by Anne Louise on Saturday

I was doing some reading on autoimmunity this morning and came across this.  I find when I'm despairing of this bizarre disease I turn to scientific research to give me hope.  Wouldn't it be great to find a cure in the next few years and be able to keep my remaining hair?!  I can dream...

Comment by Sad in chicago on Saturday

Hello.  I agree that there are many factors, but most likely any kind of baldness running in families.  My Dad starting balding very early in life and although he still had hair around his ears, it started leaving from front top.  My mother, always had fine hair, and still to this day does not have ffa, but certainly you can see her whole scalp through!  Listen, I hope there is a cure and I do hope they find a way to alleviate, but in my mind it definitely is post menopausal and family genes plus bad luck.  When I wake up in the morning and see myself in the mirror I could die it is so bad looking.  I have lost about 2.5 inches from hairline and 1 inch or so back towards and around ears.  As I have done, get yourself a couple of clip in hairpieces, get them styled to your satisfaction and go for it.  What else are you going to do?  Try to be healthy and see the best in life.  There are good days and bad days, but other people are battling things that are way worse.  I can tell you this as a cancer survivor.  I did not need chemo so I never lost my hair before and this came out of the blue and is beyond a shock.  But I am here!  If, in fact, we pass this along, it is sad, but how about passing along a hideous, terminal disease?  Wouldn't that ber worse?  And, if I had known this might be coming, then I could have prepared for it better.  Think of it that way for others done the line who may experience this in the future.

Comment by SandyA on Friday

Classical Anne - thank you so much for passing on the info although I am saddened how you obtained it. My prayers are with your daughter. I also pray that your feelings of guilt are totally wiped away and that you realize in your heart these things are totally outside of your control.

As I read the comments here about genetic markers and hereditary FFA, I am reminded about something. When I visited my parents last year (before being Dx'ed with FFA), I had noticed that my father's hairline had receded a good 2-3 inches around the entire perimeter of his head since the last time I saw him several months earlier. I just chalked it up to age (he is 82) even tho it was apparent it was not the typical male-pattern baldness (he still has his very thick bushel of hair on the top). Now that I know about FFA, his hairloss certainly follows that pattern. Oddly enough, during the time I had noticed this hairloss, he was also battling a very severe case of the shingles.

I am now wondering if men are not getting diagnosed b/c they merely attribute the receding hair line as "normal". That would certainly kick the whole possible hormonal link for a loop (although with all the younger women being Dx'ed it seems to already be in question). 

Comment by Classical Anne in NC mountains on Wednesday

Oh my goodness, Sally and Anne -- your comments are so sweet, and so very much appreciated.  Next time I get to see my far away daughter [the distance from the North Carolina mountains to Boston], I'm going to take a guarded good look at her hairline.  I don't want to worry her with that additional possibility.  But if there's any sign of alopecia, I want to help get her on the right track, right away.  Thank you all for your concern.  How lucky we all are to be part of such a caring forum of friends!


Members (268)





Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World. It's hair loss support at its best!

© 2015   Created by Alopecia World.

Badges  |  Report an Issue  |  Terms of Service