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 August 23, 2017 at 2:15pm

I had my brows micro bladed about a year ago. I burst into tears when I saw them because I felt like I had my face back. I was so happy! I have nothing further to add to what the ladies have said below-same experience for me too. Do lots of research, study before and after pics and reviews before choosing someone. Get it done- you will feel so much better! Take care. :)

Comment by Christi Q. on August 23, 2017 at 1:42pm

Great info on the microblading.  Thank you everyone!!

Comment by Halfbakedwho on August 23, 2017 at 1:30pm
Beez- hello and hello to all
I have VERY CURLY hair naturally. For about 2.5 years I have been getting a Brazilian straightening every 6 months or so, and getting regular blow-outs or blowing it out myself. The dermatologist said STOP. I had forgotton how freakin'curly my hair naturally is but I'm following orders. I am also following (though not as strictly as initially) a no gluten no dairy diet. I haven't had a biopsy yet, but just had a vampire-series of blood tests (17 TUBES!!). So far my thyroid is low-normal, that's the only result I've got. I get my hair highlighted but no color. Derm says don't do color b/c it goes into the scalp, but highlights are okay. I apply Minoxidil only where there's hair loss, in the evenings. In the morning I put the cortisone rx on in the same areas. I am very surprised to see growth in the scarred areas - completely nonplussed - I really thought those areas were "dead". Take care JRT, my first days after my diagnosis - I was literally sick with anxiety - no sleeping, no eating, no thinking except about my hairline (which I looked at every 10 minutes). People go through all kinds of messy stuff in this life - this is ours. You will feel better.
Comment by AnnieMay on August 23, 2017 at 12:54pm

ChristQ- My guess is that everyone has a different experience but I had mine done on a Thursday and by Monday I was fine. My eyebrows were almost gone so I think it was more "me" getting used to them. They do scab though about a week later and they tell you not to touch them so I wore my glasses to hide them for awhile! It did hurt a little but I asked her to use more numbing cream and it was better. And she had options for the brow colors. I would suggest bringing in some pictures of what you want. I wanted mine to look as natural as possible and remember you can go back for a touch up. For me "baby steps" was a better way to go to start. I'm going back for a touch up in the fall

Comment by Kristen P on August 23, 2017 at 12:50pm

I've been microbladed and there isn't any "down time." They are a tad bit reddish (from your skin healing) the first few days and are darker than they'll be, but it's not anything alarming. You can absolutely go about your life after you get them done! 

Comment by Christi Q. on August 23, 2017 at 12:40pm

AnnieMay, how much DOWN time was there when you did your microblading?  I can't miss any work, but don't want to go in looking scary.  Did it hurt?  How long did it take?  Did you only have one choice of brow color?

Comment by AnnieMay on August 23, 2017 at 11:22am

I had also lost almost all of my eyebrows too and I was nervous about microblading but my girls gave me a push to do it and I'm so glad I did! It was a little scary at first because they looked so dark and I hadn't seen myself with eyebrows for so long so it was a shock but they're much lighter now. I feel like I have part of my face back which I love. But make sure you do your research on the best person to go to.

Think I'll start Minoxidil tonight. I need to try something because I'm definitely noticing more thinning overall.

Do any of you have the strange "pin point" tingling in your scalp? My entire scalp feels so sensitive. It drives me crazy. Its like I can feel every strand of hair when I brush it or the wind blows. 

Pauliegirl-I'm so sorry about the scleroderma diagnosis. I was just diagnosed with osteoporosis in my spine. I believe in seeing specialists too. Feeling down about all of this today. I've always taken really good care of myself and it feels like my body has turned against me? HATE this so much. . .

Comment by pauliegirl on August 23, 2017 at 10:56am
Christi Q...I highly recommend the micriblading! Had it done 13 months ago and it made me feel so good! I have set an appt for sept 1 for a touch up. This is expected in 12-18 months from initial time. I do recommend finding someone that someone is recommending personally.
FYI on Minoxidil...I went to a rheumy last week since I figured out on my own that I do indeed have a light version of scleroderma. Great prognosis since I've had symptoms and signs for 30 years; I should do very well. ANYWAYS, the rheumy was going to start me on nifedipine for my worsening Raynaud's syndrome but instead gave me the similar oral Minoxidil thinking maybe we shall have a side effect of some hair regrowth. Started 8/19...will keep you posted.
FYI with the official scleroderma diagnosis, I have made myself an appt at Johns Hopkins in Maryland at their scleroderma center. I am a strong believer in specialists who eat, sleep and breathe a disease. Will be interesting to get their point of view on the FFA. Clearly I have significant autoimmune tendencies!
Comment by Mattsmate on August 23, 2017 at 10:48am
I lost my eyebrows starting 3 years ago for the last year, I tried to cover it with powder. Hated the way it looked and felt like I was always wiping it off accidentally.
I had them micribladed a month ago and going back for a touch up next week. I love it and it makes me feel much more normal.
Comment by Christi Q. on August 23, 2017 at 10:19am

I read quite a bit about the shedding faze after starting Minoxidil.  I was terrified to start it, but finally took the leap about 8 months ago.  I did not shed to badly and I was so thankful for that.  My hair is SO much better than it was 8 months ago.  You can't see straight through to my scalp now, but of course nothing can be done about the receding hairline.  I still color my hair as well.  The extra plus about Minoxidil is that the foam formula adds thickness to the hair and makes styling so much easier!  The bad news for me is that my eyebrows are getting worse.  Hardly anything left.  I have heard about microblading, but I'm scared to do it.  Would love to hear from others about it if you have done it.

 

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