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: 602
Latest Activity: Jul 14

Discussion Forum

CARF Conference 2018 Notes

Started by CurlyK. Last reply by kevinsstelly Jul 14. 32 Replies

CARF 2018 Conference Notes:First of all, I am so glad I went to the CARF Conference! It was worth every dime I spent – a true investment in myself, but hopefully I can bless and encourage others from what I learned.The CARF staff and volunteers are…Continue

Botox and FFA

Started by 2Dachshunds. Last reply by Shawnaynay Jul 8, 2023. 18 Replies

Hi Everyone: I remember there is a women on here who connected Botox to FFA. I was given the article, Frontal Alopecia after Repeated BotulinumToxin Type A Injections for Forehead Wrinkles:An Underestimated Entity?Antonino Di Pietro a Bianca Maria…Continue

Tags: Botox, FFA

Trying a new approach with CBD oil...

Started by Robin. Last reply by anettemandell Apr 20, 2023. 31 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

Man with FFA. New member.

Started by Thomas. Last reply by Thomas Nov 23, 2022. 27 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

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Comment by MJ on January 12, 2016 at 5:18pm
Just wanted to throw out there....chemical peels and microdermabrasion or make up with with sunscreen as triggers?? Always trying to think of things that women were not doing 15 or 20 years ago...
Comment by Luisa on January 12, 2016 at 4:35pm
Hello!Has any of you considered a tatoo as a way to disguise the alopecia?
I fear fringes are not easy and confortable...Thank you
Comment by Mike'sDeb on January 12, 2016 at 9:49am
Hi Ladies...No memory foam for me and no hormones taken. I was pre-menopausal when my symptoms began and my diagnosis was made. In fact at 51, I am just starting to have irregular periods. I have opted to take no medications for FFA but have definitely changed how I eat and what I expose to my body because my derm feels my cause is environmental. I was diagnosed about a year and a half ago and my hair loss appears to have stabilized since I first noticed the symptoms (about a year before diagnosis). After seeing some of your thoughts on what environmental factors could influence this (other than processed foods etc) I came up with the plastic microbeads that were being used in exfoliating cleansers. I actually scrubbed the inflamed follicles! These microbeads are being phased out out of products due to their potential harmful effects...who knows...just a thought!
Comment by Maz on January 12, 2016 at 9:02am

I'm sceptical about plastic in something which really doesn't touch the scalp but wouldn't discard the idea that something you put your head on for hours every night could cause a problem. However, in my case I could easily believe that it was the HRT I was on (and still am on). Specifically the testosterone which was apparently at too high a level for some time. Having cut it back I definitely am not noticing so much hair loss. Of course that may just be a coincidence but I have read that if testosterone levels aren't properly balanced by oestrogen there are likely to be side effects. I had none except, maybe, the hair loss. Seeing many of us are at an age when hormone levels are likely to fluctuate wildly it may be that this is one reason (but only one of many). I hope not because I'm not sure that I'm ready to give up the benefits of testosterone and having experimented with the dose I know it works for me.

Comment by sallylwess on January 11, 2016 at 12:53pm

Let's Solve This, I think you and I have been on the same wave length.  I recently have been having such neuropathy that has really bothered me at night.  I also wake up so hot that I can't tolerate it.  I sleep on memory foam bed and used a memory foam pillow for a long time.  I recently stopped using the pillow because I wondered if it had anything to do with the hair loss.  Quite honestly, I think there are many factors that play in to FFA/LPP.  I don't think it is any one thing.  I think some of us are more sensitive to environmental/social/stress stimulants that cause our systems to go haywire.  I think genetics play into it. If eyeglasses caused the problem then I'd see many more in my social group with the same hair loss.  I personally rarely wore glasses until my late early 50's, and then I only wore them to read.  I dyed my hair, but so did my sis.  She has her hair.  I never had a hysterectomy.  I did take hormones.  The list goes on.  I do wish we had answers.

Ann Wilson, I think that product might help soothe.  I see it has the same ingredients as others have suggested in the past.  

Comment by Ann Wilson on January 11, 2016 at 12:20pm

Wow, plastic eyeglasses! That's a thought! I have wore glasses since 6th grade although not all that time was I wearing plastic frames but many of those years I was and am! That just puts a new spin on things,doesn't it!

Anyway I was wondering if anyone has used this product before? Looks interesting....

http://www.justnaturalskincare.com/hair-loss/alopecia-hair-loss-tre...

Comment by Elizabeth on January 11, 2016 at 11:01am
Hi, some very good points I wonder if allergic reactions could be the cause. I have never had a memory foam pillow however do wear glasses.
Myself I thought perhaps it was linked to a hysterectomy I had which caused me to lose 7 pints of blood, it was after this that I began to get all my ailments.
Comment by steph on January 11, 2016 at 10:22am
DW and let's solve this, really interesting points....plastics and what we sleep on are def things to think more about.
Comment by DW on January 11, 2016 at 10:04am
Interesting thought. And I think we have to think along those lines. I have never used or owned a memory foam pillow so I know that's not the cause of my FFA. However,I agree there has to be some external factor that's causing an allergic type reaction and it must be either some new product or something that's changed since the late 80's or early 90's. I've wondered if it might be the plastic frames of eyeglasses. Most of us are of the age where we would be wearing eyeglasses and the frames are made of different plastics/composites which have changed since the early 90's which is when this disease was first diagnosed. Don't just think eyeglasses, think sunglasses as well. And what about when we wear them up on top of our heads/foreheads...
Comment by MJ on January 11, 2016 at 6:26am
I never used a memory foam pillow but just bought on a couple of weeks ago so I hope that is not the case! For me it was not the cause of my FFA but ?I don't want to worsen things!
 

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