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 Lynn555 on May 13, 2018 at 1:21pm

Comment by Lynn555 on May 13, 2018 at 1:16pm

Hi Raoula,  I have my eyebrows and no hairloss anywhere else. And yes I do have lots of vellus hairs. You can see my hairline outlined with them. But not much as far as terminal hairs. I do have areas within my sides that are smooth with no hair follicules growing. I'll see if I can find a picture and post it. There is build up of scaling all over my scalp. Not just at the sides so I thought it was a type of dermatitis or candida at first. It was extremely itchy and painful in the shower. When I wash with nizoral the itching goes away. But as soon as my hair is greasy it gets really itchy. 

Comment by RAOULA on May 13, 2018 at 12:53pm

I definitely think of androgenic alopecia and telogen effluvium. White plates are everywhere? You lose your eyebrows? Arms?
Do you have areas without hair? I too thought I had this disease, and I went to see a professor in dermatology, who gave me a biopsy to reassure me and that to confirm what he thought: androgenic alopecia.
After I lost more hair on one side, a little less on the other but I had plenty of vellus hair among my hair terminal.
My dematologist specializes in the scalp and he told me that when the hair falls, it no longer grows: there is no miniaturization. After, we can have 2: fibrosing alopecia in androgenic alopecia but ask a dermatologist earlier to reassure you.

Comment by Lynn555 on May 13, 2018 at 12:01pm

Comment by Christi Q. on May 13, 2018 at 11:57am

I've taken a real hit lately.  Probably a full inch.  So depressing.  The last photo is two years ago.  I am 60 years old.  Just needed to share today.  I sure hope all of you out there are doing better than I am regarding hair loss!

Comment by Lynn555 on May 13, 2018 at 11:13am

I will post a picture. 

Comment by Lynn555 on May 13, 2018 at 11:09am

RAOULA, thank you for your response. It is so confusing. I do notice the scaling and plaque all over my scalp. But yes I keep going back and forth on the androgenic alopecia and LPP. I guess my confusion is that the hairloss is mostly at the front, on my sides, above my ears. Maybe it is thinner all over and just more noticable on my sides because my hair there has always been thin.

My scalp has started itching again. I wish my appointmemt was earlier but I guess in the long run it doesn't matter a whole lot. :( 

Comment by RAOULA on May 13, 2018 at 7:39am

;hello for me it does not look like fibrosing alopecia. There is no miniaturization during this alopecia. It looks like androgenic alopecia with maybe a telogen effluvium. Yellow plaques may be seborrheic dermatitis

Comment by Lynn555 on May 11, 2018 at 12:00pm

Hi everyone, I haven't posted in awhile but I've been reading everyone's posts. I have a few questions because I think I have this but my dermatologist appointment isn't until Aug. 

When I look at my scalp I notice that the hairs all along my hairline are minaturizing and turning white. Then I can see how the hairline is receding backwards. Eventually those little white hairs fall out and nothing grows. So I have these single terminal hairs here and there. 

I also notice so much dandruff and gross yellow and white almost like plaque. It isn't noticable unless I take a pic using my macro camera. I don't have any red dots around hairs. My head is itchy on and off. 

When I take a picture from above you can see that my part is widest in the front and thicker in the back. So it is not following the pattern of female pattern baldness. 

I do have low iron and I was on a very restrictive diet for 6 years. I lost about 40 lbs and actually was borderline under weight. So my iron dropped to 10. It is now 23. 

I just feel I don't match any one thing perfectly. So I wondered if anyone else has hairloss like this. The hairs getting smaller and then losing colour and then just stopping all together. My worst areas are my sides above my ears. I can't wear my hair in a bun anymore because I look so bald on the sides. Ugh. 

Comment by Donna on May 10, 2018 at 1:09am

I has seen some women commenting on maybe stress being one of the factors. I am wondering that myself now. In 2010 my mom died.  6 months later I got a condition/illness called PMR (polymayalgia rheumatica), in 2016 I was helping my sister move out of state & help her cope with stressful situations of her own. Toward the end of helping her I came down with shingles,  now I am diagnosed In October 2017 with FFA.  My  hair was really coming out a lot before I decided to see the dermatologist.  She had me start with clobestatol & continue with women’s rogaine,  I haven’t had any hair loss now in a few months I think it’s been. I’ve stopped putting on anything with sunscreen on my face, I do use my foundation which has an SPF in it. So I’m not really sure what is going on. If it’s just slowed down, or stopped. I will be going back to the dermatologist in a couple weeks. I hope she doesn’t see any inflammation .  I am not going to take any drugs or injections whatever may happen either way.

 

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