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 illustr8r on February 7, 2018 at 7:04pm

I sent a note to the site Admin about the not secure/fraud missing certificate warning we got. Now, I can get in AOK on my iPhone with no problem...so ?!?

Comment by illustr8r on February 7, 2018 at 5:11pm

Hi everyone- I am also getting the warning that the site isn't secure. I can't even find a workaround on Safari or my iPhone to login in. I got in using Firefox and didn't get the warning. An overprotective Apple thing?!? Anyway, having a "bald" day, my hair feels super fine and wispy. Had a bout of insomnia and hot/cold flashes so it's all just a pain in the butt.

Comment by Minter on February 7, 2018 at 7:28am

I am getting the message that this place isn't secure also, but also here anyway- Is there a way to report this? 

Halfbakedwho, I am so very sorry that you have discovered more loss- especially in the midst of living & working in different places & now having to find a different doctor, you have enough to go through.

Comment by Jess on February 7, 2018 at 1:05am

I am also getting the message that the site isn't secure. Obviously, I proceeded anyway.

Halfbakedwho-I know what it's like to commute for work/school, and it is exhausting. Last semester I was driving about an hour and ten minutes each way, and it really takes a big chunk out of your day. I know after I'm done, all I want to do is get home and chill out, and it's a bummer to have time shaved off of your "me time." Plus you have to get up earlier. It's no fun. Hopefully, you're able to build up a client-base soon.

Comment by Halfbakedwho on February 6, 2018 at 3:53pm

Hi, are you getting a message that the site isn’t « secure »? I was upset - I am here anyway...

Today I discovered I’m losing hair at the nape of my neck. My scalp has been sensitive there for a while, and my hair seemed thinner. And so I looked, and yes, there are patches. It’s hard for me to get to see my specialist doctor who’s available only one Thursday a month in Paris, so it looks like I’m going to see someone else. I know that my regular specialist wanted me to get a biopsy. I know that another specialist will probably not change my treatment. 

I am of course feeling a bit down, but it has more to do right now with my work situation - working in another town (where I don’t live) is exhausting. I am trying to build my practice here in my new town but it will take time. 

Hope you guys are still around. 

Comment by Minter on February 5, 2018 at 7:52am

Halfbakedwho, castor oil is great- apparently it is a handy thing to have around the house as it is good for treating all sorts of things which I found out thanks  to google :-)  I'm happy for you that you got botox, it is a great little pick me up for sure, it is nice to look refreshed when you see yourself in the mirror, I know it's time for me to get it done when all I hear is " you look tired" over and over again! 

Comment by Halfbakedwho on February 4, 2018 at 11:43am

Hey again.

I just got my botox done Friday. I love this crap too. I also love the fillers but they are insane expensive. I am probably going to break down and do it again but not right away. At least they last about 2 years. Am glad I'm not the only one ; ). And I have to start using the castor oil - I have some... but there's no Ponds' here. 

Comment by Minter on February 4, 2018 at 7:45am

I've not seen any new growth since using the castor oil :-( but, it feels great on my skin and especially my super itchy forearms- so growth or no growth I will continue to use it and I thank you illustrated8r for turning me on to castor oil! Oh and thanks to you I often use ponds cold cream to clean my face, I feel all plumped up afterwords ;-D  

Halfbakedwho,  I use botox, I usually get it done about once a year and I last got it done last April, luckily it lasts about 8 months for me- I want to get it done again, but apparently you should wait after getting brows microbladed for a couple of months and I just had my 3rd followup after my very first appointment so I will probably end up getting botox again in April/May.  I love the results, it is bad enough having thinning hair I don't want to look tired or angry all the time on top of it!  Often times doctors have a special for first time clients, so it may be less expensive and look for good reviews etc... I was only unhappy with my botox results once and that was, ironically, from a very well renowned plastic surgeon :-/  

I have gotten fillers, but that was, wow, now that I am thinking about it, almost 10 years ago!  Fillers are pricey and I toss it around now and again, but I can't justify the money for fillers, I can for botox though!  I also had a bad reaction the first time with fillers as I had a breakout of cold sores inside my mouth from having fillers around my chin/jaw and it made my chin bruise and basically turn purple, it was horrendous looking- I got a prescription for valtrax which cleared it all up and apparently if/when I ever get fillers again I need to have a course of valtrax beforehand to avoid having it occur again- so that is my story and cautionary filler tale, if you have every had cold sores or chickenpox tell the doctor beforehand ;-) 

Comment by Jess on February 4, 2018 at 6:42am

Hmm. I thought retin-a stimulated collagen production and actually thickened the skin. But, I did read that it can also trigger rosacea and be pretty harsh, which concerns me. I, too, stopped using sunscreen in recent months. I don't like not using it, but I also don't want to keep it up if it is playing a role. Bah. It seems like most things related to this are just a roll of the dice.

Comment by Halfbakedwho on February 4, 2018 at 5:30am

OK Admissions time. Who here (if any of you) gets fillers or Botox? With my hair going, I feel like my face has to be its best. However I really don’t like the idea, and it’s cray-cray expensive. Thoughts? 

Oh and yes the week was hard b/c of cancellations, lack of sleep, time, etc. But it’s Sunday now, and Sunday is a Very Good Thing. 

 

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