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 Debs on June 27, 2013 at 10:53am

EYELINER TATTOOS

I had my eyebrows tattooed in January and love them. This morning I had eyeliner tattooed because I can see that I am losing some of my eyelashes. The process was as follows:

Applied anaesthetic gel to numb the area.
That is left for several minutes.
Tattoo needle is used to prick the skin and more anaesthetic gel is applied so it can go deeper before the actually pigment is tattoed in.
The upper eyelids are done with eyes closed. It doesn't hurt and there was very little sensation.
The lower eyelids you have eyes open - BUT you look up and away so you don't see a tattoo needle coming at your eye it comes at you from an angle so it is out of your sight. The same procedure is done on the lower eyelid.

I hate injections and nearly faint when I have a blood test, I have a very low pain threshold and I can honestly say this does not hurt and you never seen any needles or tattoo equipment coming near your eyes.

I thoroughly recommend getting your eyelashes enhanced. I just had a subtle 'enhancement' I did not have a thick line of eyeliner applied. If I now lose my eyelashes I have this enhancement in place to mask the hairloss. It is a huge weight off my mind. The effect is very natural and not at all 'madeup'. I went to see my mother after I had it done and she loves it.

You need to ensure you have a very good permenant makeup artist to do your work. In the UK I recommend and go to Belinda Hayle in Chertsey, Surrey.

www.belindahayle.com

I had the work done at 10am today, I have no pain and no swelling at all. Am delighted. XXXXX

Comment by Debs on June 26, 2013 at 7:51am

Pam since you have not seen these folk for 15 years they will not have a clear picture in their head of what you look like, they too will have changed with time, weight/wrinkles/hair greying & thining... so I doubt that your hairline will be noticed. I am like Celia, I only tell very close family and a few close girlfriends, this is simply because I don't want to be in a position of having to educate people about FFA and alopecia when I just want to forget about it and get on with life as normal. When you see your friends I would just play it by ear. Enjoy yourself. XXX

Comment by Kath UK on June 25, 2013 at 6:17pm

Hi Pam - I hope you enjoy your reunion with old friends and relatives and I'd agree with Celia that probably nobody will notice any difference in your hair - they'll just be so delighted to see you again!
Even though I've actually lost two and a half inches off my hairline now, the only person who ever seemed to notice was my daughter who asked me one day why I had started to wear headbands.
We're all different and I take the opposite approach to Celia in that I now tend to tell friends and family, quite casually, that I've got a skin problem that's destroying my hair. I've found that if I am very matter-of-fact about it then people take their cue from me. Well - this approach works for me anyway. But like I said, we're all different and I've had this FFA for over eight years - possibly longer and have more or less come to terms with it.

Comment by Celia on June 25, 2013 at 5:03pm

Hey Pam ! My advice for what it's worth - is stay cool and say nothing. They will prob not notice anyway. Wait until you are ready - don't be freaked out because you have a social 'do'. I still have told only family - and actually - they say they don't notice. No big deal for them ! I have cut my husband's hair since we met in 1969. We are now 63ish. I think he would be panicking if I were to say hmmmmmmm looks a bit thin on top ! But he is supportive, if a little weary of me searching in the mirror every day ! And so - Pam - enjoy your time with your friends and family - DO NOT TALK ABOUT IT UNTIL YOU HAVE TO !!!!!! XXXXX

Comment by Pam on June 25, 2013 at 4:32pm

I am finding it a great support linking in to this group, it just echoes so many of my feelings and anguish over this condition.
I am off to Canada tomorrow for three weeks, to see old friends and relations who I haven`t seen for well over fifteen years. I am longing to see them, but also have a horrible thought that they will notice my vanishing hairline and say nothing...should I be the first to mention it??

Comment by Debs on June 25, 2013 at 11:38am

I wore my wig for over 17 hours last week at work... I honestly did not know I had anything on my head. There is no sensation from a wig, it isn't hot, itchy or anything else. 95% of women have an average size head, different wig brands can vary slightly but you have straps inside (like a bra) that you can loosen/tighten up. Like the other ladies have said please check out www.wigsupport.com for everything wig related.

Note: counter-intuitively synthetic wigs can look/feel more natural than a human hair wig. Synthetics maintain their style when washed and are a lot less hassle. Recommend a synthetic to begin with. XXXX

Comment by Alice on June 25, 2013 at 11:08am

Rita, I suspect that the reason derms are seeing FFA in "affluent" women is b/c they are the ones who seek out a specialist when they are losing hair. I believe that FFA is a lot more common than is generally thought and that a lot of postmenopausal women think it's just part of normal hair thinning that often comes with aging. Most of us will admit that we didn't notice it right away.

Comment by chris for hair on June 25, 2013 at 10:50am

Sandy's comments inspire me. I also wear synthetic, open wefted wigs and live in a hot climate and am outside most of the day. A couple of weeks ago I experimented with leaving my own puny hair down or wearing my wig in a low ponytail. The ponytail was much cooler. I could never get my own hair into a good ponytail anyway, so that is not an option.
BTW, my policy in selling wigs to my clients is to give the lowest online price I can find on the day of the sale. While this may not make as much profit, I still do make money. I have found that the online stores use a bigger markup than the manufacturer recommends and then give the discount. If storefront retailers were more customer oriented, they would compete with the online stores and still make a profit. Unfortunately many do not see things this way.

Comment by Rita - Canada on June 25, 2013 at 10:37am

Yesterday was my 3rd visit to derm. One has to see the assistant prior and told me in their research, FFA was seen mainly in Postmenopausal,Caucasian,Affluent Women. The word affluent startled me(I would consider myself middle class)and I wondered-ok-prob.eats well/colors hair as I do,perhaps a multitude of vitamins etc. What the heck does this all mean really? Eat poorly,discontinue hair coloring & vits if this is what causes this affliction. Anyway, the Derm came in & told her I had tried topical Clobetasol for 8 mths now & hair continued to shed and didn't really want to do the oral drug route. However, because she continuously reminded me that if I did nothing & give up,I would surely lose much of my hair, I came away with the dreaded Overused drug in society, an antibiotic. The one she prescribed is Doxycycline. I immediately went to the health store for probiotics but am hugely uptight about taking this drug for 3 mth trial .She also said to continue w/Clobetasol.

Comment by Celia on June 25, 2013 at 9:39am

Carol - I looked at the wig support group earlier today - I am not quite ready yet, but it looks like a good one. Some ladies here have had this problem for a number of years. For me it's only been 18 months but it feels like a lifetime ! I totally admire many of you who haven't let IT take over your life - I am still battling with this. It's so comforting though to know there are many people out there who understand. I see Dr Harries on Thursday and sometimes I think that making that round trip is a little pointless. Any questions any of you might have - I will ask. XX

 

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