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: 587
Latest Activity: on Friday

Discussion Forum

Regarding my successful trial with cannabis oil tincures!

Started by Robin. Last reply by Joe Nyagah on Friday. 67 Replies

I am letting you all know of my trial of using cannabis oil tincture on my hairline for the past 4 months. I was diagnosed with FFA about 5 years ago. I have used finasteride and clobetasol as well as tried steroid injections and doxycycline. I also…Continue

Trying a new approach with CBD oil...

Started by Robin. Last reply by Amerycol on Wednesday. 24 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

Study: Leave-on facial products linked to FFA

Started by ammie. Last reply by Bill_Andrews on Wednesday. 25 Replies

Have you all seen this article yet? derm mentioned sunscreen as a possible trigger during our first visit but…Continue

Counselling?! We are our own!

Started by Liz Lov. Last reply by Yringel Apr 5. 16 Replies

I got my FFA diagnosis by biopsy  in January 2014, 4 years ago.Here’s my first post in this forum:” Just diagnosed ( twice) with probable frontal fibrosing alopecia !Only went to doc for skin check up! Mentioned recent hair loss as an after thought-…Continue

Tags: ffa, alopecia, fibrosing, frontal

Comment Wall


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Comment by sammi on April 3, 2021 at 4:05pm

Hi, I was wondering if anyone with FFA had any success with hair extensions or Lucinda Ellery interlace system? Looking into both

options as my daughters wedding is coming up and would like to make fringe and sides look fuller. The interlace system seems a big step and very expensive. Any advice would be greatly appreciated.

Comment by Dyners on February 28, 2021 at 1:51pm

hi CurlyK,

Wow I think that style looks really great on you! 

I haven’t been on here in a while, but nice to read through all the comments. 

Thanks so much for sharing.

Comment by CurlyK on February 6, 2021 at 1:27pm

Trying a new bonded hair piece. One with a little more sass!

Comment by Elizabeth W on November 3, 2020 at 9:52pm

Here is a link to  PUBMED abstracts about the link between getting flu shots and other vaccines with Lichen Planus.

All you get is a summary. You can click on the DOI number and get the image of the first page of the article. It looks like they have case studies.  These articles about at least 10 years old.

I've had flu shots since the late 1970s and my last one on September 1, but my lichen planus symptoms started about a month before the shot.

Comment by Maddy, California, U.S. on November 3, 2020 at 7:01pm

Hi Louise,

My story sounds very much like your own. Mine started in 2006. I had a really BAD flu in 2005, so in 2006, I got my very first flu vaccine. Within a few weeks, I noticed red bumps on the hairline on the top of my head and one of my temples started to thin. Didn't connect it. Got another flu shot in 2007, both temples thinned and noticed a bit of loss on the hairline on top...still didn't connect it. After my third and final flu shot in 2008, I lost all hair on my temples and about 1/2 inch on top. Finally...I connected it and went to several doctors (endocrinologist and immunologist) who both said that the flu vaccine could be causing it (all the derms I went to said it wasn't likely connected). Anyway, long story, sort of short, I have not had a flu shot since and I have not had any more hair loss or flare-ups. Oh, and, my brows thinned in there somewhere too and hair on arms is almost completely gone. Anyway, just wanted you to know that you are not alone with this connection!

Comment by Louise on November 3, 2020 at 6:42pm

Hi Maddy, 

You can communicate with me in this site. 

Best regards 


Comment by Maddy, California, U.S. on November 3, 2020 at 6:29pm

Hi Everyone, I am wondering if someone can help me with this technical issue. I received an email from this site (which I am a member of) from a member named Louise. She was asking about possible connections between FFA and the flu vaccine. I have looked everywhere on this site, but cannot actually find her post or discussion, and it's not in my inbox, even though the email said it was sent out to all members of the FFA group. Anyway, I would like to respond to her, but I can't find her. If anyone knows how I can find her message, please let me know. Thank you so much! 

Comment by illustr8r on September 26, 2020 at 3:13am

Hi ladies!

Yes, it’s been awhile since I was here too. So long that I was logged out from the site. It’s nice to see familiar names pop up in the notifications.

I’m happy to report that I’m still fairly stable. Still using castor oil 3-5 times a week. I got lazy about doing it initially during lockdown and I noticed increased shed-so back to being diligent about it. I let my pixie grow out because of lockdown. Once I got back to my stylist I kept some of the length and it’s a modified bowl cut, inverse Dorothy Hamilton or early Justin Bieber. It’s kinda fun. 

I had my brows redone. It’s been over 3 years and the old microblading had faded a lot. This time I got hybrid brows. They look great and the healing process was much easier and quicker than plain microblading. I got back in 2weeks for a touch up and then they will be perfect. This stylist plans for yearly touch ups. I’m going to do that. I don’t miss drawing these suckers on every morning!

I hope everyone has navigated COVID and the lockdowns okay where ever you are. Stay safe and healthy! 

Comment by Elizabeth W on September 25, 2020 at 11:51pm

HI Afraid,

Thanks for your kind words.  I think my hair loss has been stable for a couple of years.  My photo is 2 or 3 years old. 

It has been a stressful time. I am not sure why there has been less activity on this forum.

Comment by Afraid on September 25, 2020 at 10:57pm

Hi Elizabeth

thank you for sharing, I hope the cream works quickly and relives the symptoms for you.  I too have FFA, LLP and LP.... feels like a curse doesn’t it.  

Can I ask if your hair loss has stabilised?   It looks good in your photograph.  

The activity in this thread has reduced significantly...I wonder how everyone is and if this condition is influenced by stressful situations how everyone is responding to Covid-19? 

take care Elizabeth 


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