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: 277
Latest Activity: 1 minute ago

Discussion Forum

Joining FFA Clinical Research Study

Started by ammie. Last reply by LoriO yesterday. 5 Replies

Yesterday, I had my first appointment with Dr. Olsen at Duke University. My biopsy came back as LPP and she confirmed FFA during the visit. They took photos, measured the hair loss and I was entered in the voluntary clinical research study. For the…Continue

FFA and skin problem

Started by Charlotte. Last reply by SandyA yesterday. 26 Replies

Hi everyoneI wonder if some of you also have different skin since the ffa startet? My skin is rough and my derm now thinks (after two skin biopsies with no pathological findings) that there maybe a connection with my hair loss. .. I also wanted to…Continue

FFA Comparison Chart & Research

Started by Dragon&Fox. Last reply by Wyobalance Nov 16. 3 Replies

It's been a while since I've posted here.The google doc Chart was down for a few weeks for anyone who was interested in adding their stats to the Chart. I just got it back up.  It's protected now so you need to contact me to access it. I will…Continue

Can you guys tell me what you think?

Started by momto1. Last reply by Wyobalance Nov 15. 26 Replies

I've had a pretty terrible experience at my last two visits at my derm. I've been losing hair now about 4 years and my hair line has definitely receded. This derm was condescending and made me feel like I shouldn't even be there. She's supposed to…Continue

Comment Wall


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Comment by christiekd on November 19, 2015 at 11:24am

Hi Marilyn,

I have an appointment at Raydiance in West Bloomfield in early December and have sent you a friend request hoping that you could help answer some of my questions.  I live in Ann Arbor and have had FFA for 6 years.  I am at the point where I'm beginning to feel the need to cover up my hairline.  Thanks!

Comment by Jen on November 18, 2015 at 4:07pm


Comment by Wyobalance on November 18, 2015 at 3:37pm

The base is a high quality lace.  I forget the name, like New York or something.  Just straight lace, I don't have bonded edges or anything.   

Comment by Jen on November 18, 2015 at 2:52pm


Can you describe the way your 4x4 is woven? Is the hair attached to a lace (mesh) piece or some other type of material?  Thanks so much. I love it that you found a solution that works well.

Comment by Wyobalance on November 18, 2015 at 2:24pm

Marian, I did the whole starter kit thing with   They created a frontal piece which was perfect, however I felt it was too much front hair for me.  So I cut the small pieces from it and eventually called them personally and asked for a 4x4.  You would probably still need to have them to send you the swatches and choose one that matches your hair, and you send them a sample of your own hair.  I hope I'm not  leading anyone astray.  This is what works for me, at least till I lose more hair.  

Comment by SJC on November 17, 2015 at 9:58pm

Marian, do you have side effects from the Avodart? 

Comment by Marian on November 17, 2015 at 8:12pm
Lauren I have also had many rounds of injections with no dents. I am now on Avodart and although hairloss is still creeping along I think these interventions have bought me some time.
Comment by Marian on November 17, 2015 at 8:09pm
Wyobalance- I took a look on the website and did you get that starter kit with colour swatches and measuring stuff? Or is there a place on it that you can buy hair by the piece without going through that? Did you have to colour or cut the piece you got? Lauren I have been on Plaquinel for Years, I have lupus as well as FFA and and LLP. The trifecta I call it! I do blood tests every 3 months and have field tests for my eyes annually. No problems here... Except you are more sensitive to the sun. I'm a red head from a long line of Irish red heads so I have always been careful anyway.
Comment by Mel on November 17, 2015 at 8:07pm
Lauren -- no I just did the one round and did not want another. It seemed to speed up shedding, but I can't be certain if there was a causal relationship between the shots and hair loss.
Comment by MJ on November 17, 2015 at 8:03pm
Lauren, I have been on plaquenal for almost two years. Need bloodworm only occasionally to look at liver enzymes. I take milk thistle daily. Also need to be monitored for retinal changes. So far all is well with everything.

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