Frontal Fibrosing Alopecia

Information

Frontal Fibrosing Alopecia

This is specifically for frontal fibrosing alopecia sufferers. To share information and support each other.

Location: Dubai UAE
Members: 601
Latest Activity: Jul 8, 2023

Discussion Forum

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

Dermatologists who specialize in alopecia?

Started by NorthCarolinaMama. Last reply by tcasal Nov 2, 2022. 1 Reply

Hope everyone is having a great weekend!I'm a freelance writer working on a story about alopecia. I need to find a dermatologist at major hospital or teaching institution to interview -- any suggestions?I've already reached to physicians at Duke,…Continue

Comment Wall

Comment

You need to be a member of Frontal Fibrosing Alopecia to add comments!

Comment by Liz on November 22, 2012 at 1:23pm

Hi. Is Dr Harries a private doctor? I cant understand why I was prescribed 8 weeks of antibiotics and 8 weeks of steriods when I have no irritation. I stopped both early (although safely!)Would you tell Dr Harris about the possible heredity factor because my mum has FFA to. My mum has no eyebrows. I on the other hand have lost half of 1 eyebrow! Im thinking seriously about contacting Channel 4 and asking to appear on Embaressing Illneses. Myabe I'd get some answers, and then again maybe not!
xx

Comment by Debs on November 22, 2012 at 6:52am

Hello All, Celia I am glad you are sorting out your brows, I will go along to this clinic in Chertsey when mine need a top up, had them done last November and they are still dark, have faded a little but it will be awhile before I need to touch them again. Went to a lovely Christmas fayre in London yesterday and had lunch. I wore a wig. My 2 girlfriends know about my FFA and saw me in a wig back in Sept. I wore a bob with a fringe, a Gisele Mayer, they both liked it. Nobody stared at me! A young woman working a a restaurant was wearing a very nice long wig herself, I knew because it was similar to a long wig I have purchased but my girlfriends had no idea she was in a wig and in fact my friend Sally commented on what lovely hair she had! Going to wear my wigs to several events in Dec to gain confiidence before going into them full time in Jan. Can't wait to hear Celia what Dr Harries says. Have a lovely week. Hope all the ladies in the USA had a fab thanksgiving. XX

Comment by MairiM on November 21, 2012 at 7:51pm

Rather belated Thanksgiving wishes to all of you celebrating today.
Celia - can you tell us where you found the new site that mentions Dr Harries?
Reading all your posts has been good for me as it makes me feel I am one of the more fortunate ones. I have no itching, flaking or redness, and I have lost only a small bit of one eyebrow. All I have is the loss of hair :-( and the characteristic pale skin. We have noted the variety of treatments we are getting, but I wonder if Dr Harries will have any ideas on why our symptoms vary so much also.

Comment by Judy on November 21, 2012 at 3:14pm

Happy Thanksgiving from me also. Even though we all have this crummy condition there are so many things to be thankful for so I am forgetting FAA tomorrow except being thankful for this group and realizing there are other women having similiar feelings.
I too am interested in the nutrition question.

Comment by KarenGinny - Iowa, US on November 21, 2012 at 11:32am

Jules, I would like to hear about the effects of diet and other supplements as well. Although I don't know if it would help me regain hair, if it would make my existing hair stronger that would be good. Happy Thanksgiving to everyone from the US! I am thankful that I found this group and that we all have a place we can come and talk about this condition with others who understand. Have a good day!

Comment by PamW San Diego, CA, USA on November 21, 2012 at 10:00am
celia, I have a question for Dr. haries. Dr. vera Price, who has done much of the research here in the US says that Actos can work for FFA. can you ask him about it. She says that is the only drug which has shown to stop the hair loss. The other drugs just control the itching, burning, etc.

by the way, the white flaking is not the cream. It is our scalp reacting to the inflammation. it is called scaling.

I know, it is not a holiday for you, but tomorrow is Thanksgiving in the US. So, I want to wish us all a Happy Thanksgiving. And to my friends in the UK, thanks!

Celia, also dont be upset after the tatooing. Your brows will be really, really dark. it is a shock after not having any for a while. Just be patient, they will fade. I just had a touch up last Saturday because they were so light.
Comment by Jules UK on November 21, 2012 at 9:39am

Bold - but hairy.... sounds good to me!

Comment by Jules UK on November 21, 2012 at 8:45am

Hi everyone. Celia, I hope Dr Harries is worth the trip. I've booked a travelodge for the night before my appt with him because it's quite early. The danger is that we pin too much hope on him. I'd be interested to know what he thinks about hair products - for styling or colouring. Should we avoid them or can he recommend any? Also, is there anything - such as supplements or particular foods - that might either aggravate the condition and be avoided, or help hair growth and be included in our diet? I'm just desparate to be doing something, anything! I'd dye my hair green if it helped!

Comment by Judy on November 18, 2012 at 11:45pm

True....... Recently, before I knew I had FAA, I visited my family and forgot my eye makeup --- my grandchildren were fascinated!! My grandson kept telling people "Look! my grandma doesn't have eyebrows!!"

Comment by Lace on November 18, 2012 at 11:14pm

What would be worse is if you only put one on!

 

Members (602)

 
 
 

Disclaimer

Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.

© 2024   Created by Alopecia World.   Powered by

Badges  |  Report an Issue  |  Terms of Service