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: 505
Latest Activity: yesterday

Discussion Forum

Regarding my successful trial with cannabis oil tincures!

Started by Robin. Last reply by sallylwess yesterday. 25 Replies

I am letting you all know of my trial of using cannabis oil tincture on my hairline for the past 4 months. I was diagnosed with FFA about 5 years ago. I have used finasteride and clobetasol as well as tried steroid injections and doxycycline. I also…Continue

CARF Conference 2018 Notes

Started by CurlyK. Last reply by sallylwess yesterday. 21 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

New to FFA

Started by JAM. Last reply by BubbaLu on Wednesday. 8 Replies

Hi all, I have only this week been told by a dermatologist that I have FFA and my only options are to take a product called Hydroxyxhloroquine or go progressively bald. In reasearching this it is a an anti inflammatory and immune suppressant.  Some…Continue

New to FFA group (sort of!)

Started by BooBear. Last reply by Minter Jun 28. 4 Replies

Hello all.  Although I have been a faithful follower of this group for about 6 months now, this is the first time I’ve actually joined in.  I have probably had Ffa for about 3-4 years now and I’m pretty much a textbook case, as much as one exists.…Continue

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Comment by Montana Giirl on Tuesday

Hello,

I was diagnosed in April after having shingles. Past pictures reveal by 2011 my eyebrows were "fading" and my hair line had a shine to it.

For 20 years I have mixed Retin A cream with Mary Kay extra emolient night cream. It's great for preventing wrinkles! I have raised white bumps under the skin between my eyes and around my chin. The retin a keeps my skin supple and I think while the bumps never go away they shrink. Retin A can be harsh on your skin without a good moisturizer first, no perfume.

Accutane and Retin A work so well to clear acne and heal the skin follicles that some of us might see results. My dermatologist says my insurance wont pay for it. 

Comment by PBsunshine1 on Tuesday

Hi everyone.

I had micro blading on my eyebrows last year before my diagnosis. My skin is so thick I cried the whole time she was doing them. :( they looked great but the scar issue just kept peeling now they are all gone.

Comment by KarenD on Tuesday

Curly K, did you get the retinol treatment that was mentioned in you CARF notes?  Can't wait to see you new hairdo!

Also to those talking about the thick eyebrow skin, I know my dermatologist mentioned to me that atrophy of the eyebrow area was part of FFA. So many extra little things go along with this disease that I never realized when I first read about it!

Comment by Halfbakedwho on Monday

Hi everyone, I haven’t posted in a while. I have been trying to take a break, to not think about it, to get on with it, etc. 

There has been more hair loss on top. Again, no one but me notices but I go through my freak-outs, like tonight, wondering how I will deal with this. Since my diagnosis last year, I have lost a good centimeter all around. It’s been hot here, so I wonder what having to wear hair will be like with the heat. IT’s also because I saw old pictures of myself on FB and they depressed me. 

I am planning a new business that will keep me in the public eye a bit. So that’s a bit initmidating, and so yuck to that. 

I again admit I haven’t been diligent nor vigilant with all the hair-crap supposedly needed to keep this at bay; next week I’m going to see my original dermatologist at the Clinique Soubouraud in Paris instead of Dr. Famous Man whom I saw in February. If you recall, Dr. FM took me off just about everything except for cortisone lotion and tetracycline. Since nothing seems to make a difference I know I just use things when I think of it. I’m not sure what I’m expecting with Dr. Less-Famous but she took a lot more time with me, which is something. Maybe it’s just a way to stay hopeful and switch things up...

Afraid - I am finding Denial not a bad Defense but it only goes so far. It works well depending on my frame of mind, the weather, and the mood of my hair too of course. I look like a woman with a receding hair-line, so... like an effeminate 50-ish man. Not to offend anyone, but maybe this is a good Trans look. Or something. Not what I’m going for in any case. 

Lastly, because of hair-trauma but not only - I am getting my filler-injections again. Expensive, but I’m saving for them. I figure, there’s more face to see, so I will try to make it look as decent as I can. 

It’s 2 in the morning and in France no AC so too hot to sleep and hot flashes besides, so thanks for listening...

Comment by CurlyK on Monday

Hi ladies! Be kind to yourself. Acceptance comes gradually. While I know I'm in a state of acceptance, I still have days when I wish I had a head full of my own hair instead of my hair piece. I still have days when my head itches which serves to remind me of this crazy disease.

I get my new hair piece in two weeks. I'll post a new picture once it's cut and styled. I guess you could say this is one strangely "fun" thing about wearing a hair piece. I can really change it up if I want! I've been looking at new styles to show my stylist.

Since the CARF conference, I have obtained a serum and night cream with Retin-A in it. I can already tell a difference in my skin.

Comment by Minter on Monday

@AnnieMay, my brow tech kept asking me how old I was because of my thick skin, she was using the sharpest blades and still was going through them like crazy, sigh.  

 With your micro needling, as long as you trust your aesthetician & have talked it through with her about your skin and it's special needs thanks to stupid FFA  you should be ok I would think, maybe even do just a small bit and see how it reacts? I would love to get a procedure like that done to have smoother skin, though I am getting botox done after the summer when I am (hopefully) done sweating like a I don't know what because of this awful heat & humidity & of course the sweaty side effects of stupid FFA!!  

I haven't tried Joan Rivers great hair day, yet.. I use Boost n Blend & I am happy with it, but I read such good things about the Joan Rivers that maybe I should try it one of these days.  I also use Revolution hair powder on my sides, it stays all day and I love it.  Our morning routines are so exhausting, you are so right, I've gotten pretty good at the powders and stuff, but it would be so nice to just get up and not need to do all this "stuff" to our hair and now skin to just look normal. 

@Donna, I remember my 1 month touch up as not being that very painful.   She was ready for my skin this time though, she didn't use the blades, she used the machine as it was able to penetrate deeper and I think that helped a lot. 

Comment by AnnieMay on Monday

My skin feels so thick too. Like leather all over my face. And very mottled on the sides by my temples where my hairline is getting so thin. Makes me look so much older than I am. With our experiences with micro blading it makes me nervous to have micro needling done??

Losing hair where I want it but then I have strange little light vellus hairs showing up on my face that I don't want? on my chin, temples, upper lip?? Has anyone tried derma flash? 

I hate the shine too which is especially awful during the summer. You're right it doesn't get tan. Thank you Minter. I'll try the Rimmel Insta Fix! 

My hair is now also very thin on top and the sides and with the summer light you can really see my scalp through my hair. I've been using the Joan Rivers Great Hair Day powder and it really helps. So much work to try and feel somewhat normal everyday. Exhausting. . .

Comment by Donna on July 16, 2018 at 10:28am

Minter - I’m glad to see your comment on the microblading. Your tech commenting on how thick your brow skin was. I just had the same experience & googled it but didnt see anything specific to eyebrows being thick skinned. My lady that did mine also commented on my brow skin being thick. It was all going smoothly kind of painless until she got to that part. I’m going back for my 1 month touch up. I hope she is able to penetrate the skin without too much pain this time. 

Comment by Minter on July 16, 2018 at 9:00am

Annie May, my skin has changed so much too, I hate it! So bumpy and rough, when I was getting my brows done the tech kept commenting on how "thick" my skin is :-(  she pretty much gave up on doing the actual microblading as all the different blades she kept trying weren't going in deep enough and it was getting really painful, she decided to go for a powdery brow instead, they look great, but still...... anyway,  I tried Retin A a few years ago and ended up at Urgent Care because of a really bad reaction, severe hives and redness, itchiness, oh it was awful! Don't know if it was because of Stupid FFA or just my own sensitivity though. 

Oh one thing I have been meaning to post here, my "shiny white hairless band" at the hairline is also the bane of my existence, I HATE the shine and have tried primers, powders & even talcum powder of all things (read somewhere that is what guys sometimes use on their bald head to get rid of the shine) it does work somewhat, but adds to the paleness :-/  

I picked up Rimmel Insta Fix & Matt the other week as I had a coupon ;-D but still it was only like $6-$7 anyway, it really works! I blend it with a contour powder or bit of bronzer now as it is summer and even though I am getting a little tan on my face, of course the weird pale hairless band does not seem to really tan, which is par for the course with Stupid FFA. But the powder really hides the shine, so thought I would pass it on!

Comment by Afraid on July 16, 2018 at 12:23am

Thanks for your reply Plf x

has anyone considered they may have coeliac disease?  Another of my denial strategies is constantly exploring alternative diagnoses!!!  

 

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