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: 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

Comment Wall

Comment

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

Comment by Brenda, IL US on August 27, 2013 at 12:55pm

Thanks Maddy. I just can't afford a trip to CA. I'll have to find someone closer. Looking forward to seeing pics if you put them on. That's something i don't know how to do.

Comment by Maddy, California, U.S. on August 27, 2013 at 9:42am

Hi Chrisy, The cost for the two hair pieces was $1500, so about $750 each. I won't wear them all the time, so I think they will last for a long time. No, you do not need extra headbands or anything to keep them in place. They have tiny hair combs attached around the "cap" area that fit into your own hair and then snap down. They are very secure when on...even in the windiest conditions. The cap area is only a small band and then there is mesh in the middle with the real hair sown on...so it's not at all hot (which I was wondering about), which surprised me. Once I get them on Thursday, maybe I can take some photos and somehow share them on here. I'll try to figure that out.

Comment by Debs on August 27, 2013 at 5:32am

Polly... hello and welcome to our group. I am so pleased you have found us so early on in your journey with FFA...XXX

Liz, no I dont have headaches with any of my wigs. I don't wear a wig cap as they tend to be quite tight and I think would definately give me heaches if I wore them. The owner and stylist of my local wig salon in fact advised me to start off wearing wigs without wig caps... she showed me how to pin my own hair up using hair grips (bobby pins), I now have cut my own hair shorter so I don't need to pin it up. I just put my wig directly on my head. I would also try loosening up the 2 straps inside the wig at the back hairline... experiment to see how tight it needs to be to feel secure. Liz, the wig is not pressing on a nerve, however you may have it pulled too far forwards - a common mistake to begin with - put your hand sideways on starting at your eyebrows... the wig should begin 4 fingers up from you eyebrows... if it is placed so your wig hairline starts 4 fingers up from your eyebrows it will not be pressing on anything to give headaches. XXX

Comment by Chrisy, MA USA on August 27, 2013 at 12:01am
Hi Maddy, may I ask how much it costs? I'm sure is much more than the ready ones. Also, how good it blends with your own hair and if you need extra support like headbands to make sure it stays in place. Thank you!
Comment by Maddy, California, U.S. on August 26, 2013 at 9:38pm

Hi Brenda, I had them made by a lady in Costa Mesa, CA, who worked for 25 years at a wig/hairpiece salon in Newport Beach, CA. She was recommended to me by a close friend who went through chemo and had several pieces made by her. The hairpieces are made of real hair. She finds your exact color and texture and then makes the headpieces. It "snaps" on to the top of your head, so, yes, the sides are also covered. If you want actual hair right next to your ears (like a strip), she can add them. I did not do that. These headpieces add more hair to the sides and front and then taper off in the back. It all blends in with your own hair. Anyway, if you would like her information, just let me know and I can email it to you.

Comment by Brenda, IL US on August 26, 2013 at 8:56pm

Maddy where did you have the top pieces made? And do they cover the sides of your face? Thats where my hair loss is most apparent right now.

Comment by Annie on August 26, 2013 at 4:55pm

Jules, I use the generic 5% Rogaine foam. I just squeeze out the specified amount on the ledge of my sink, dip my fingers in, & apply it between the rows of hair all over my scalp & around the sides of my face every morning. My doctor said the foam only needs to be applied once a day after the first 6 weeks.

Comment by Jules UK on August 26, 2013 at 3:47pm
It's encouraging to hear of Regaine's successes. However, I've been using it for around 7 weeks, to no effect so far, sadly. But my hair is thinning in new places. Fingers are still crossed though, and I'd be glad to participate in any research! Does anyone have any tips as to how best to apply Regaine? I part the hair and rub it in to about 2" back but so much seems to be taken up by hair before it reaches the scalp. Dr Harries said it is formulated to spread when it reaches warm skin. X
Comment by Maddy, California, U.S. on August 26, 2013 at 3:34pm

Hi, This is Sandy from California again. Forgot to say one thing. I have been using Latisse (bimatoprost ophthalmic solution) on my eyelashes and eyebrows ever since they starting looking sparse and so far, it has worked great. I still have decent eyebrow and my eyelashes are long! Anyway, it worked for me.

Comment by Polly UK on August 26, 2013 at 3:16pm
I'm sorry I forgot to add that I'm really glad I found this group and thank you all for sharing so much information x
 

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