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 Afraid on February 4, 2019 at 5:40pm

Hi Kandy15,

im not on FB either so really appreciate all info shared here.

A little while ago I had a similar request which I foolishly replied to & it was someone requesting money!  I obviously did not oblige, but it did highlight how desperate and vulnerable I was in terms of thinking this person was about to share valuable information regarding a potential magical solution for for hair problem!! 

Comment by Kandy15 on February 4, 2019 at 4:32pm

Ladies, 

I'm pretty new to this forum and I wanted to ask you all something. I am not on Facebook, only on this site as a member.  I recently had a private message sent to me through the comment section from someone who told me that she had something to tell me that she couldn't post on the regular comment wall because it wasn't private.  She read my profile and said she felt the need to reach out to me.  Her member name is not one that I could find that has ever commented on this comment wall before and I have gone way back to when this group was started.  Just wondering if anyone else has had someone reach out to them that way.  I haven't responded because I'm just unsure about it.    

Comment by Minter on February 4, 2019 at 8:37am

Oh and to add to that, I can't use any perfumed or 'strong" soaps/lotions on my hands/forearms as I turn into a scratching maniac it affects me that badly- again red and splotchy and beyond itchy.  The rest of me is fine, just my hands/forearms are like that, weird. 

Comment by Minter on February 4, 2019 at 8:34am

Haha illustr8r, that is usually when I remember stuff too!  

A couple of years ago I tried a moisturizer with Retin A.  I used it only once or twice and my neck turned bright red, blotchy and really itchy- it was so bad I ended up having to go to the doctor for help.  Since then it's been no more retin A for me :-( 

Comment by illustr8r on February 4, 2019 at 3:45am

Younique was the brand name. At midnight, I remembered! LOL!! :)

Comment by illustr8r on February 3, 2019 at 6:58pm

I’ve never been officially tested but I’m highly reactive to perfumes in creams and make up. A few years ago I bought some make up and neck cream from a friend who was doing one of those,”come to my house and buy stuff” parties. I cannot remember the brand name though! Anyway, after 2 weeks of using the neck cream my skin looked like crepe paper and I itched terribly all over. I had to go to the dr and he gave me a round of steroid pills. Was this a trigger for things to come?

I use the same foundation as Donna does and I also use Beautycounter. 

Comment by Kandy15 on February 3, 2019 at 11:25am

Wow, this is all so interesting and helpful.  Just yesterday I bought a hair color and hairspray from Whole Foods, thinking I could trust those products.  After reading these comments I looked at the ingredients and they both have something called Benzoate, so they are going back.  A few weeks ago I found a company called Be Green and ordered a facial wash, day cream, night cream, deodorant and body lotion.  All of the products are rated as 1 on the EWG as safe so I'm heading in the right direction with the wonderful guidance from you ladies.  Now to find hair color that is safe and hairspray too.  Gotta have it since my hair roots get gray in 4 weeks and my limp, no body hair needs the hairspray to look decent.  Oh to have my full head of glorious hair back instead of limp straw.....

But we keep on fighting to keep what is ours.

Comment by PamW San Diego, CA, USA on February 3, 2019 at 10:57am

I also had the patch testing done, and I am allergic to fragrance and perfumes.  I take my own soap with me whenever I travel!  Very careful about lotions, laundry detergents and soaps.  

Comment by Afraid on February 3, 2019 at 4:47am

Hi, 

linking to to the current thread...interestingly I pushed my dermatologist to refer me for skin patch testing in December and the results found I was allergic to perfume/fragrance.  The common culprits are limonene and linaloon (which I’d not noted previously) these chemicals are found in millions of products, including expensive or ‘natural’ products.  I can forward information from the dermatologist if helpful to anyone.   I had already moved towards paraben and sulphate free and my current shampoo listed 10 ingredients it proudly did not include but it does include limonene.     I have stopped spraying perfume on my skin and the rash on my neck has disappeared.  I had no idea I was allergic to perfume. On reflection I think my sensitivity to fragrance began when I was going through IVF.  The TCM guy I saw the other day said he had encountered many patients with hair loss due to IVF (ivf + stress?). I guess a range of factors.  

Ps such is the irony of this silly situation I was bought  a beautiful bottle of perfume (£200!!!!!) for Christmas... as a distraction to major hair loss  2 days before being told I was allergic to perfume...haha!!! 

Comment by Donna on February 3, 2019 at 12:38am

Kandy - I use Maybelline dream velvet foundation & dream satin.  They don’t have any of those 3 oxybenzone, avobenzone, octinoxate in them that I can read. I also just bought Boots No7 primer which doesn’t have those in it.  I haven’t checked my mascara or eyeshadow.  I use seldom. I’m not fanatic about my make up but if I can avoid as much as possible of these ingredients I will. I do use cetaphil as my all over moisturizer.

 

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