Frontal Fibrosing Alopecia

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Frontal Fibrosing Alopecia

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

Location: Dubai UAE
Members: 381
Latest Activity: 21 hours ago

Discussion Forum

Man with FFA. New member.

Started by Thomas. Last reply by Thomas 21 hours ago. 9 Replies

Hello,Thought I’d share my experience, as one of the few men with FFA, in the hope that it will be useful to others. It’s possible that the condition progresses and responds differently in men. I’m 40, live in London and otherwise healthy.I first…Continue

New member - seeking support

Started by SCS. Last reply by Razors R Stupid on Wednesday. 15 Replies

hello fellow FFA-ers, This has been a hard day for me. Was trying to do some research about FFA only to discover not much is possible for us.I noticed that I'm starting to lose my eyebrows in May of 2013, a little over a year after my father passed…Continue

Extensions yay or nay?

Started by Minter. Last reply by EllieFortuneWigs on Wednesday. 23 Replies

The last few days I have been zooming round the internet looking at hair extensions and the more I am learning, the more I am thinking that they might work for me right now- so has anyone gotten extensions? How did/do you like them?Continue

Tags: Extensions, Hair

FFA burnout stories

Started by Kathy in Denver. Last reply by Airam-FFA on Wednesday. 10 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

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Comment by Michaela yesterday

Hi. Can you please fill in this formular and share it. Thank you so much. http://www.survio.com/survey/d/K4G7N2Q1O0B8G1D4F

Comment by Lo on January 4, 2017 at 4:18pm

Hi, Celia and group.  I definitely appreciate the site - and the people.  It is clear that we are all "in this" together, and having that sense of community is priceless.  Celia - may I ask if you have always taken the holistic approach - and how has that helped with your overall hair loss?  Are you still able to "wear" your own hair?  I, too, started losing mine in 2010-2011.

Comment by Celia on January 4, 2017 at 3:58pm

Hi Pam , hope you had a good festive time. Will have a get together THIS YEAR. It's nice to be back on the forum but I stopped checking a long time ago as I felt coping without was in a way better. So glad that this way of communicating has helped to support so many people. There is now such a lot of useful info here perhaps the derms should log on and really search for clues documented in posts regarding FFA. In order to A .....find the trigger and B ....find a cure. In the meantime, we should all find ways of making us feel good about ourselves, eyebrow enhancements, hairpieces etc. In my opinion, I would avoid meds and go for a holistic way of treating the condition. Good food, sensible lifestyle and vitamins... for those of you who are relatively new to this site, I was diagnosed in 2011, after a serious bout of pneumonia involving lots of anti-biotics and chest x rays.

Celia  

Comment by Pam on January 1, 2017 at 3:01pm

Happy New Year to everyone ! Lets hope 2017 is a good one. Glad to have you back online Celia - your group has been a great support to so many of us. Pam.

Comment by Gittan on December 27, 2016 at 12:40pm
I am swedish too. We can be in touch. Have sent you my contactadresses
Comment by Jane on December 27, 2016 at 11:35am

Hi, I am a woman from Sweden recently diagnosed with FFA. I wonder if there are any other members from Sweden in this group?

/Jane

Comment by Leni on December 19, 2016 at 9:49pm
Just wanted to share... Just started following this page on Facebook.

Cicatricial Alopecia Research Foundation (CARF)


Also, I contacted a doctor in Florida Dr. Raymond Fertig. I had inquired about finding a specialist in my area. Here's what he sent me.

Please look at the The Cicatricial Alopecia Research Foundation (CARF) website. If you subscribe to the CARF site they will send you a list of recommendations in your area. You can also call them number included below. I wish you the best.

http://www.carfintl.org/
Tel: 1-310-801-3450

On page click "join" on right side of page or here is direct link:
https://www.registration123.com/CARF/MAIN/
Comment by Judy on December 19, 2016 at 2:01am
PS: forgot to mention amount of hair loss. About 1/2"
On my forehead but none on the sides. Lost all hair on eyebrows, arms and legs.
Comment by Judy on December 19, 2016 at 1:52am
Kathy, my timeline was: 1-1.5 years for the forehead
hair loss, eyebrows started 4 or 5 years earlier but my doctor kept telling me it was caused by 'getting older'! When the hair loss and scabbing began my hairdresser told me To go to a dermatologist immediately. The derm was very familiar with FFA and I started treatment right away---clobasel (sp) and plaquenel. I feel very fortunate and to have found a good doctor. Also lucky I didn't loose as much hairline as some of the others.
Yes, I imagine there are many positive and happy results out there. Wishing success to all.
Comment by Airam-FFA on December 18, 2016 at 10:56pm
Hi Maddy - interesting what you say about the flu jab. Might be a factor. I put my FFA down to stress, but I think my hair loss has also co-incided with taking the flu jab for the first time.xOx
 

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