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 24, 2018 at 4:14pm

I’ve been using a new hair product  that I like a lot. It’s Living Proof, PHD (Perfect Hair Day) 5 in 1 Styling Treatment. It saves me from having to use conditioner in the shower, it detangler and gives a bit of volume too-especially to the bad hair that is like straw on the ends. 

My wee pixie just needs a tiny pea sized amount before I blow dry my hair. Just thought I’d share! :)

Comment by ammie on February 23, 2018 at 7:21am

Christi Q.,, my derm suggested I use Rogaine on my eyebrows. She suggested to use a q-tip but I just dab it on with my finger. I think it works OK. I still have eyebrows not like I used to but I get by. I don't use Clobetabsol I am on Tacrolimus ointment 0.1 percent. 

Comment by Donna on February 22, 2018 at 10:53pm

Christi Q Yes I have used it & still am since October.  After 6-7 weeks I stopped losing hair .  Went to the derm & she was pleased, I am now down to using 3 times a week until I see her again in May.  I originally posted a more detailed message but it wouldn’t post for some reason.

Comment by Christi Q. on February 22, 2018 at 11:25am

Hello all!  Went to a new derm today (didn't like my old one).  I am already on Dutasteride and Minoxidil, but she is going to add CLOBETASOL PROP 0.05% SOLN 25ML  .  She said to just rub it in over my Minoxidil.  Have any of you used this?  Also, I have lost my eyebrows over the past year.  She told me to start putting the Minoxidil on my eyebrows (tiny dab).  Has anyone done this?  If that works, I sure wish my old derm would have suggested that before I lost all my brows!

Comment by Halfbakedwho on February 22, 2018 at 6:21am

Hi Rachel and everyone,

I live in Nantes - not exactly on the border : (. I will be in Reims tomorrow for the ceremony for my BIL. A bit closer. If you come to Paris or get further west, let me know! We will be heading to Prague and Budapest next summer... it would be nice to see each other, agreed : ). Thank you for the blogging, Sally...

Comment by KarenD on February 21, 2018 at 1:06pm

Sally, your blog post is just beautiful!  Thank you so much for sharing that with us!  What a wonderful read to help us as we all adjust to our new normal. And your new wig is incredible, as are your fantastic boots!  

Comment by Rachel Germany on February 21, 2018 at 12:33pm

Minter, your hair cut sounds fab, I'd love to see a pic of something similar.  I have never had short hair in my life so the thought of it scares me more than a little.  I just don't think it would suit me, I'm a tall gal with swimmers shoulders (never actually did that much swimming but people have always asked if I was a swimmer).  Well maybe I can get away with my long hair for a while yet and then do headbands.  I am also very interested in bonding with contact skin, something which seems to be popular amongst men. Here in Germany I found a salon in Hamburg that have specialised in it.

http://www.hairsystems-heydecke.de/haarsysteme.html

Has anybody had experience with this type of hair piece?  I would be interested to hear your views on such hair systems.

Keep well and btw @Halfbakedwho, I really have thought about you a lot the last days and my thoughts are with you and your family.  I was also wondering where abouts in France you live, do you happen to live in the north east.  I was thinking how exciting it would be to get a European continent meeting going. Even if we only met up every few years.  Well it's just a pro active thought but who knows?

Comment by sallylwess on February 21, 2018 at 12:20pm

I have not posted in a while, but I have learned so much from all of you.  I recently wrote a blog post about my journey with FFA and hair loss, I am sharing it here with you.  We are all in this together, and that helps us on our way. https://sallysbloggingspot.blogspot.com/2018/02/life-lessons-learne...

Comment by Minter on February 21, 2018 at 9:01am

Same here, thank heavens for our "virtual" group! I'd be lost without my daily check-in, I do know I would have no idea how to handle this without you all :-) 

Afraid, I echo Halfbakedwho, please don't blame yourself- we have done nothing to cause this to happen to us, it is just the luck of the draw, yay and to repeat the above, it is lucky that we have each found this group to support each other! 

Illustrated8R, I love my "grown out" pixie look- I've had a super short pixie in the past, but I much prefer this, having one that is longer is much easier for sure. I use my hair color powder on my sides & part and then  "glue" down the sides- they are so pretty, (if I may say so myself haha)! a long curl swooping down on each side of my face- love it! Though I've learned to wait until my hair is dry to do the gluing or else they look glued down :-/  

Comment by Afraid on February 20, 2018 at 4:35pm

Thanks...I love your take on things! I already feel more positive.  

I think the blame is for being too anxious and stressed about significant life events for a sustained period of time... people say stress is a trigger... if only I had cared less?!  Haha.  

Thank heavens for our ‘virtual’ group x

 

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