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 on April 24, 2014 at 1:06pm

The information provided is really helpful to me. I am very grateful. It is important that I find a solution so that I can move forward confidently without having to worry about the wind or any other adverse condition. The steroid injections do not help and I am afraid of any medication.  I hope that others on this site find this useful.  Thanks to both you and Pam. 

Comment by Jules UK on April 24, 2014 at 12:18pm

Well, Pam keeps hers on all the time in between hair appts, so about 6 weeks.  Sounds wonderful!  I hope she doesn't mind me talking about her like this! :)

Comment by Jen on April 24, 2014 at 11:19am

Thank you Jules,

Wonderful feed back.  I suppose you can shower with them for a few days.

Comment by Jules UK on April 24, 2014 at 11:09am

Hi Jen, the hairpieces I've ordered are fixed with wig tape but it's similar to a wound dressing apparently, allowing the skin to breathe so the hairpiece can stay in place for prolonged periods.

Comment by Jen on April 24, 2014 at 11:08am

Liz,

I just checked the Trendco site and saw Vesta. Is this the one you use?  It looks like it would do the job.  I will see if I can get something like that here. thanks so much.

Comment by Jen on April 24, 2014 at 11:01am

Hi MJ, It is a relief that I do not suffer from the symptoms but at the same time I cannot tell when I need to see the doctor.

Liz, Are the clips hard on your hairline?   Does your piece look like bangs or some other types. I live in Canada and will go to the hairpiece shops here. I purchased some fake bangs at the mall but they did not match so I believe that I need something better.

Comment by MJ on April 23, 2014 at 4:19pm
Jen, inam like you as I have no symptoms either. I am very thankful for that, however it is impossible for me to tell if I am active or not. I was wondering how the front hair pieces work foe someone with fine hair...seems like clips would be hard to hide.
MJ
Comment by Liz on April 23, 2014 at 4:01pm

Jen. I have a hair piece which I bought from Trendco for about £50. It clips in and covers where my hair has gone. I love it! I can forget I have it in. It blends in with my hair. My son said to his friend last week 'Look at my mums new wig' and his friend said 'what wig'. It does exactly what I need it to do. x

Comment by Jen on April 23, 2014 at 2:45pm

Hi Jules,

Thank you for your reply.  Would I be presumptuous to ask if you can post pictures of the 2 hairpieces before you attach them? I am thinking that pictures after you attach them is too much to ask.  It would be a really good thing if we can figure out a solution to the hairline so we can feel normal again.  For now, I may just need to work on the edges with small hairpieces and clever hairstyling. I am not ready for a wig.

 

My FFA has absolutely no symptoms. No itch or pain or inflammation. I just lose the hair in the shower.  Sometimes  I may see 4 or so baby hairs on my desk which look like the ones on my hairline. 

Comment by Jules UK on April 23, 2014 at 3:32am
Jen, I've ordered 2 hairpieces just as you describe. They're from Pam's hairdresser in Cheltenham but they're not ready yet. They should be OK to leave in situ and survive washing, drying, swimming etc.... That's the plan anyway. I'll let you know.
Re the posts about how to tell when FFA is active, I find that the "doll's head hair" appears plus some mild itching or that "crawling" sensation occurr. I have it at the moment and my front hairline has receded by about a cm in places. Looking a bit chewed! Hey ho!
 

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