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: 217
Latest Activity: 6 hours ago

Discussion Forum

New Member

Started by Lynn. Last reply by PamW San Diego, CA, USA on Sunday. 22 Replies

Hello everyone,Unfortunately, I think I accidentally sent each member of this group an email message. I'm sorry, as I was trying to start a discussion, so please accept my apologies. I am newly diagnosed with FFA a little over 3 months ago. I am…Continue

Hair care products

Started by Ann Wilson. Last reply by sharon Jan 21. 10 Replies

I am at the very beginning of my FFA journey. I have few eyebrow hairs and thinning hair on my left temple. My dermatologist has prescribed topical medications as a first step....triamcinolone 0.1% for the eyebrow region and clobetasol 0.05% for the…Continue

FFA - further pregnancy?

Started by Charlotte. Last reply by juliec Jan 20. 6 Replies

Hi everyoneI'm 34years and was diagnosed with FFA few months ago. I noticed losing my eyebrows some months after my first child was born. During my second pregnancy everything seemed to be ok. Then again after the birth I started losing hair again.…Continue

FFA and laser treatment

Started by Brooke. Last reply by TrayG Jan 19. 16 Replies

A few months ago I read an article in the paper saying that a dermatologist, Dr.Antonella Tosti, at the University of Florida, was seeing 80% hair regrowth in FFA patients using laser therapy.  Have any of you had experience with this method?I was…Continue

Comment Wall

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Comment by Classical Anne in NC mountains 6 hours ago

I've had success in my eyebrows with Rogaine 5% each morning, and Elidel cream each night.  I apply both with a Q-tip, no fuss, no cleanup.  To answer Jen's question, I have been told by many sources that you DO lose hair a few weeks after starting the Rogaine, but then it fills in nicely.  Of course this is ONLY in the areas that have not been affected by FFA.  Sadly, there is no hope of regeneration when the follicles scar over.

Comment by NatalieW 6 hours ago
Thanks MJ and Alice. That is helpful. I am using the foam twice a day. Have definitely noticed a difference on my eyebrows for which I am very grateful. They were disappearing very fast and look almost normal now. But just trying to work out his much of my head I should put it on
Comment by Alice 7 hours ago

I use generic Rogaine all over my head, or at least as much as I can cover with one dropperful of the liquid. It has made my hair much thicker and easier to style to cover up the hairloss. It actually worked do well that my hairdresser started using it, too. I started with 2% twicecp a day, then switched to 5% once a day. 

Comment by MJ 7 hours ago
NatalieW,
I only use it in the hairline and eyebrows. I cannot really say if it is working or not. The idea is that it strenghens the follicle to combat the follicle attack. I dont think I have had any new growth....maybe it just helps slow the rate of loss. I wouldnt unnessarily use it on the whole head.
Comment by Jen 7 hours ago

Has anyone experienced more hair loss before hair gain when using Rogaine?

Comment by NatalieW 7 hours ago

Just wondering - of those using Regaine and seeing an effect - how many are using it on their whole head, or just around the area of hair loss. Funnily enough, my Derm said to only put it around my hair loss "as you don't want overgrowth"!! ha - as if any of us could ever worry about having TOO much hair. Had to laugh.

Comment by Sas Holland 17 hours ago

ok thanx Jen,  I will have a look at the site you mentioned!

Comment by Jen yesterday

If you join "her alopecia.com" and look for a poster named "hairscared", there is a demonstration under tricks for topper clips. She is a brave beautiful woman who wears hair beautifully and posts pictures. She wrote the tip that I posted.  Hair  on a thread looked somewhat like an apron.  The apron waist band would represent the thread and the front of the apron would be the area where the long hair is attached.  You would place the hair at the nape of your neck at the back under your own hair, bring the thread to the top front of your head and tie it there. Then you can attach bangs to the thread instead of your own hair.  I hope that I have not made you more confused. I suppose that you could just tie a strong string around your hairline area and attach your bangs to the string. It may be worth a try for those who do not want to clip onto existing hair.

Jen.

Comment by Sas Holland yesterday

LOL, Alice!

Comment by Alice yesterday

Sas Holland, English is my mother tongue and I didn't understand it, either.

 

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