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: Nov 25, 2024

Discussion Forum

Food Allergy Testing question

Started by NorthCarolinaMama. Last reply by lordiron Nov 25, 2024. 10 Replies

Hello!I was wondering if anyone has been tested for food allergies to determine if a particular food is causing inflammation, which in turn could exacerbate FFA. I had the skin test a couple of years ago at an allergy clinic, and it came back…Continue

CARF Conference 2018 Notes

Started by CurlyK. Last reply by kevinsstelly Jul 14, 2024. 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

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Comment by Rita - Canada on August 12, 2014 at 3:10pm
Yes Liz very happy with the hairpiece. I had purchased a full wig a couple of yrs ago and although pricey, don't care for it as too much hair( from 1 extreme to another).
Comment by Liz on August 12, 2014 at 3:02pm

Hi Rita. It's great to hear that you are happy with the hairpiece you bought. It does make a lot of difference doesn't it :o)

C I am currently seeing Dr Wong at Hommerton hospital in north London. She attends the CARF meetings and I heard about her from Debs. My Gp referred me to Dr Wong and Dr Wong is happy to see me once or twice a year.

xx

Comment by Classical Anne in NC mountains on August 12, 2014 at 2:06pm

I still am taking absolutely nothing for the hair loss, except for the scalp injections which I still swear by.  I have more 'female pattern baldness' now, i.e. thinning on the top, but truly have not lost more than a few hairs from receding hairline recently.  It had receded about 3/4 inch before I got the diagnosis and started the injections, a little over a year ago.  Since then it has receded an additional 1/2 inch or so at the temples, in the first few months.  It has progressed less than that frontally, I rarely have any redness, and almost no itching at all anymore.  I hope that gives hope to some of our new ladies.

Comment by Rita - Canada on August 12, 2014 at 1:41pm

oh I forgot to mention I have an appt to have my eyebrows tattooed. Yikes am concerned as it is so permanent at least until touch up needed.

Comment by Rita - Canada on August 12, 2014 at 1:36pm

I stopped all meds & even the Clobetasol for scalp.  However, I am prepared to start the Doxycycline 100mg again if I see intense shedding. It is a terrible condition but thanks to Liz & her sharing of the piece she uses, I knew what to look for &  have purchased & often wear the hairpiece. It gives me confidence & I have no worries in the wind. 

Comment by Celia on August 12, 2014 at 1:16pm

Norfolk Girl - you will look and feel great once the eyebrows are done - they make such a difference.   Liz, I wonder which derm you are currently seeing.  I have seen no-one this year, am not taking any meds, just using dermovate and nothing has changed radically except I obsess on it less prob because I am not taking tabs every morning.  I wonder ?

Comment by Liz on August 12, 2014 at 1:08pm

Hi all. CJ I have seen Dr Farrant, Dr Harries, Dr Christos and recently Dr Sharon Wong at Hommerton hospital. 

In my experience all the derms I have seen know their stuff and the medications etc that they offer are all similar.

My personal opinion is find a derm who you like, one who you feel comfortable with and one who you feel at ease with. One who gives YOU what you need.

I prefer one who is warm and empathetic. I know others of you prefer someone who is efficient rather than warm. The one that works for you is the best one.

xx

Comment by Norfolk Girl on August 12, 2014 at 10:45am
Whoops, that lotion is mometasone furoate!
Comment by Norfolk Girl on August 12, 2014 at 10:44am
Hi CJ. I was diagnosed with FFA two years ago at which point my hairline had stopped receding but I had lost about an inch and a half. My bigger issue is however the almost complete loss of my eyebrows which were Kate Middleton like! I am having eyebrow tattoos from Belinda Hayle in September which I am really looking forward to! I have seen Dr Farrant twice, once about six weeks ago as I thought my hairline had started again(itching and redness) and he prescribed Elocon scalp lotion (momenta some furoate) which is a steroid lotion. At present it appears to have done the trick. I live in Norfolk so not exactly convenient for Dr Farrant in Sussex but I do think he is good. I have seen him privately both times. Interestingly I got nowhere with one visit to the GP about three years ago but then investigated the idea of eyebrow transplant and it was the trichologist who thought I had FFA and referred me to Farrant. By the way eyebrow transplants are a nO no as they are thought to be likely to set off the FFA.
Comment by Debs on August 12, 2014 at 10:13am
CJ my email is debs-007@tiscali.co.uk please contact me and i will send the fact sheet immediately.
 

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