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 Jen S. on March 14, 2014 at 4:34pm

Hi all!  I admit that I have been obsessed with this site the last week.  I had a biopsy last week that confirmed Wednesday what I thought was already happening -- mild FFA.  Really - is there such as thing as "mild-forever-hair loss"  Yea!  (sarcasm).

I am having trouble getting past this.  You all seem to have adjusted pretty well.  How do I get there?  How do I accept?  How do I look in the mirror?  I'm only 43.  My 10-year-old son has been telling on a hourly basis how beautiful I am and how he'll love me forever.  My 12-year old son doesn't know what to think and my husband tells me that I am strong enough to get through this.  I am not sure I agree right now. 

I had a series of shots around my hairline and am using Minoxodil 5% and Clobestal (sp?). 

I want to fight this.  I don't really know where to start. So many things that "may or may not work" or that "work for a little while then stop".  Argh!!!  So angry.   I don't drink more than maybe a glass of wine a week, I don't smoke, I run six days a week (though haven't at all in the past few weeks of my personal pity party).  Why me?

Help!  Advice?  Where do I begin? I hate going to sleep and I hate waking up to this every morning as well.

Anyway, I promise I won't rant all the time.  I didn't expect to today -- just happened.  Regardless, I am so very grateful that you started this group, Celia. 

For now, I will continue to linger on the site -- looking for hope and strength.  Take care fellow fighters.  Bye from Marietta GA.

Comment by Jules UK on March 14, 2014 at 3:55pm
Pam, I saw Rob, your hairdresser, today. He was so helpful! I've ordered 2 hairpieces. I'm looking forward to seeing your new hairdo at c's next week too.
Comment by claire on March 14, 2014 at 3:43pm

YES A GOOD POINT WHAT WOULD YOU LIKE ME TO BRING FOR LUNCH?

Comment by Pam on March 14, 2014 at 1:53pm

Celia - looking forward to seeing you on Sat Mar 22nd. What time are you expecting us? Would you like us to bring anything towards the lunch?

Comment by Polly UK on March 13, 2014 at 5:50pm
Got it thanks C xx
Comment by Celia on March 13, 2014 at 5:33pm

Polly I have just sent you an e mail on this site - let me know here if you don't get it. x

Comment by Anne Louise on March 13, 2014 at 4:15pm
Thank you all for the eyebrow tattoo feedback. I had my consult today and I will likely go through with it, once I get the courage up. The permanent nature of it puts me in a bit of a panic, yet I love the thought of not having to deal with makeup and swimming without looking like an alien. I started using Latisee two weeks ago, and even though it's too soon to tell, I am noticing some slight re growth. Would a tattoo hamper any potential re growth?
Comment by Polly UK on March 13, 2014 at 3:20pm
Hi Celia, really looking forward to our meeting next week - please can you send me your address and also a taxi firm phone number, I will be coming by train again.
Also are you still taking lymecycline and if not did you notice any changes when you stopped? I've taken the last tablet today of my 2 month prescription and my scalp has felt so good during that time that I'm concerned what will happen now..

Thank you Jules for your participation in the telephone conference and the research sounds very interesting. Look forward to hearing more about it on 22nd.

I had my eyebrows done at the end of January and I'm very happy with them, it's great not having to pencil them in every morning and they look so much better than I could ever do.

Polly x
Comment by Celia on March 13, 2014 at 1:42pm

Sounds good Julie - well done  !  Claire I hope you got the address for the 22nd.

Comment by Jules UK on March 13, 2014 at 7:09am
Sorry, that shpuld read Jules!
C, do you want to add this feedback to our agenda at our get-together and I could bring my paperwork to date?
 

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