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: 601
Latest Activity: Jul 8, 2023

Discussion Forum

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

Dermatologists who specialize in alopecia?

Started by NorthCarolinaMama. Last reply by tcasal Nov 2, 2022. 1 Reply

Hope everyone is having a great weekend!I'm a freelance writer working on a story about alopecia. I need to find a dermatologist at major hospital or teaching institution to interview -- any suggestions?I've already reached to physicians at Duke,…Continue

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Comment by Maddy, California, U.S. on March 5, 2014 at 6:42pm

Hi Anne, Just wanted to pipe in here. I have used Latisse on my brows ever since I started to notice they were thinning...which was about 9 years ago. So far, I still have my brows, but I use it every night on both my brows and lashes. Ironically, people actually comment on how long my eyelashes are...they were almost non-existent before I started the Latisse. Also, your comment about having electrolysis years ago caught my attention. Similarly, my bangs used to be SO thick that I had to thin them out every week throughout my 20s and 30s...now I struggle to have enough hair to hide my receding hairline :(. Yeah, it's pretty depressing, but I am trying really hard not to let it run my life. I did buy a partial hairpiece and have it at the ready when I feel I just can't hide it any more. I'm having surgery tomorrow and am scared to death that the rest of my hair will fall out! Anyway, welcome and I'm sorry you got the FFA diagnosis, but this forum is a great help. Hang in there.

Comment by Anne Louise on March 5, 2014 at 5:36pm
Annie thanks for the tip! I will definitely look into the SmartBrow. I suppose at some point I will get the tattoo but I'm not ready yet and I will have to save up for it as well. I can't believe how much money I have spent in the past month alone on stuff related to my FFA . : (
Comment by Annie on March 5, 2014 at 10:43am

Anne, welcome to our group.  I'm sorry to hear about your diagnosis.  You will find lots of support & information here.   Regarding your eyebrows:  There's a product called SmartBrow that I learned about on this site.  You can find it online at DermStore.  It's pricey -- $29.99, but it does an unbelievable job thickening up your eyebrows.  It's kind of like mascara with a tiny brush to fill in bare areas and a mascara wand to thicken up your existing eyebrows.  It's also waterproof, which is perfect for swimming.  I find that the colors run a little dark, so you may want to order a shade lighter than normal.  (I have medium brown hair & order the blonde color.)  Shipping is free with this item, and you should be able to find a coupon code online for 20% off your first order.  Good luck.

Comment by Brenda, IL US on March 5, 2014 at 10:18am

My dermatologist told me that my eyebrows would come back but not my hair.  It"s been over a year and i haven't had much luck.  A few hairs sprouted after four rounds of steroid injections but they've fallen out and the indentations from the shots haven't filled in yet.  Latisse is helping to bring back my eyelashes.

Comment by Anne Louise on March 5, 2014 at 10:06am
I am definitely considering getting my eyebrows tattooed, but the pictures I have seen online are not all that appealing. I have always had very thick dark eyebrows, in fact I spent a considerable amount of money on electrolysis years ago because they were such maintenance. How ironic! Now I take forever penciling them in but I am finally content with how they look and everyone tells me they look fine.

My problem is that I love to swim, I'm on a Master's swim team and I'm in the pool twice a week. I truly look like an alien as I only have a few stray hairs left. If my hairline continues to recede...yikes!

My dermatologist started me on Latisse which I just started on Friday and he seemed pretty hopeful that it would work. When I asked about the scarring he replied that he is not so certain that the eyebrows have scarring alopecia. It makes no sense to me and I think he was trying to give me some hope as he just dealt me a devastating diagnosis. Has anyone heard this? Can the eyebrow loss in fact be a different sort of pathology than the scalp loss?
Comment by Brenda, IL US on March 5, 2014 at 10:06am

Hi Anne welcome to the group.  It's easier dealing with FFA when you have support.  You"ll find that here.  I'm trying to find a place to get my eyebrows done.  I've had steroid injections, and I've used latisse and rogaine with no luck.  Good luck to you.

Comment by MJ on March 5, 2014 at 7:12am
Anne, if you still have some eyebrows left, you might want to try Rogaine on them. My derm has me using it on my thinning brows and it appears to be working. It has been two months and I do have some new sprouts and they have not thinned anymore.
Comment by Celia on March 5, 2014 at 2:49am

Anne - sorry you too have needed to join us.  On a practical note - have you thought about having your eyebrows tattooed on - it makes such a difference rather than having to pencil them in.  Do a bit of research and find a really efficient person to go to - it's worth it.  I have chosen not to tell friends about my FFA as I didn't want anyone to feel sorry for me or to constantly think about my hair when they see me.  I just try to hide it with styling and will do that as long as I can.  I remember years ago a friend referring to a woman in the town as - 'you know who I mean - she wears a wig.'  I never thought about that at the time but I certainly do now ! I don't want FFA to be the way I am viewed so - it's under wraps !  Something for you to think about. x

Comment by MJ on March 4, 2014 at 4:29pm
Anne, I can relate to your sentiments. From an overall vanity perspective, I found having a mastectomy and reconstructed breast at age 46 easier to handle! Four years later, all that is a distant memory. My cancer is over and done with, but as you said, I don't know when FFA will end.
Comment by Liz on March 4, 2014 at 4:21pm

Hi Anne. Welcome to the group. I'm 42 and have had a diagnosis for the past 18 months. My mum also has FFA xx

 

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