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: 320
Latest Activity: 18 hours ago

Discussion Forum

Newly diagnosed in Colorado

Started by Kikibob. Last reply by Lo yesterday. 47 Replies

Hello.  I've been reading this discussion board for a week, since I was diagnosed with FFA on Feb. 12th.  I'm 54 years old and lost my eyebrows probably 3 years ago which, at the time, I attributed to a side effect of 5 years on Tomoxifen.  I've…Continue

Paquenil Treatments

Started by K9crazychick. Last reply by sallylwess yesterday. 14 Replies

I was newly diagnosed 6 months ago through a biopsy. Started Clobetosol and Doxycycline treatments. MD now wants me to consider the anti-malarial med, Paquenil, after he explained to me the increased risks, I wanted to hold off until I did my…Continue

Tags: Paquenil

Excimer Laser Treatment

Started by Dragon&Fox Apr 29. 0 Replies

Anyone have this?Continue

HELP! Insomnia source? Could it be finasteride and/or Clobetasol?

Started by Dragon&Fox. Last reply by Dragon&Fox Apr 29. 2 Replies

I've been using Clobetasol on my scalp every night for over a year (+ shampoo) and been taking low doses of finasteride since last spring everyday. Suddenly the last month I started suffering brutal insomnia!! I can fall asleep at night but I wake…Continue

Comment Wall


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

Comment by Celia on Monday

Hello ladies, having just got back on this site I am hoping I haven't lost contact again since I cannot view any posts after Jen's on April 25. Best wishes, Celia.

Comment by Jen on April 25, 2016 at 10:12am

Hi Celia,

Thank you for starting this for starting this online group. It has been very informative for me. reading these stories has made me feel less alone and more calm.

Comment by Meme on April 25, 2016 at 4:10am

Thank you Celia, I found the get together a real help last time so would definitely like to come again. 

Comment by Celia on April 24, 2016 at 5:07pm

Hi Meme it was good to meet with you albeit ages ago over in my home. So sorry to hear that your air loss is continuing I hope to have another get together soon and would love you to be here..

Comment by Meme on April 24, 2016 at 1:23pm

Great to hear from you Celia. I to havent posted for a while. My hair loss has got worse and is noticeable and  I am undecided as to whether to have a hair piece or go down the wig route. But like you I am just trying to get on with life and enjoy it. Hope you are well. 

Comment by Celia on April 23, 2016 at 6:18pm

Thank you, Liz. I've been able to see how you are, but unable to comment until today when I was given a new password. What is noticeable is how many younger women are experiencing FFA.

Comment by Celia on April 23, 2016 at 6:13pm

I haven't kept up for a very long time, but I hope there are some people out there who may remember me ! I haven't taken any medication for at least a year. I didn't want to trigger anything else !

I was diagnosed in 2011 at a . time after an illness that meant that I took serious antibiotics.

I've lost hair above my ears and about3cm from my hairline. I have my eyebrows tattooed thanks to Deb who introduced me to Belinda Hayley in Chertsey.- she does my brows every 18 months.

I see Dr Ali at Charing Cross Hospital periodically.

All stressful but try to enjoy life anyway.

Comment by Liz on April 23, 2016 at 6:08pm
Hi Celia. I hope that you are well. It's lovely to see that the forum that you started is getting lots of use. You should be proud. You've created a lovely, supportive environment for people to share thier stories,worries and successes xx
Comment by Celia on April 23, 2016 at 5:59pm

Hello ladies. For some tome I haven't been able to post and could not log on. It's bizarre since it was I who started this frontal fibrosing alopecia group on Alopecia World back in 2012. Today I managed to log on again and it's heartening to note tat so many ladies are still communicating..

Comment by Sad in chicago on April 23, 2016 at 1:12pm

Thank you Denise!  


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