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: 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

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Comment by Wyobalance on November 17, 2015 at 10:37am

Jen, I'm pretty frugal.  So at this time, I cut small pieces from the $400 piece and when they wear out, I cut another piece from the 4x4 large piece.  It should last me at least a couple of years, unless, of course, I have much larger areas to cover.  I don't know what I will do when I need a topper.  Right now they result in too much hair putting more hair on what I already have.  I'm a biker (bicycle) and hiker and will probably go through a human hair topper in a minute.  I'm not good at doing selfies, which would  better explain what I do.  I will be attending the CARF conference in New Orleans June 3-5 so I can demo there.  You are welcome to private message me with your contact # if you have further questions.  Oh, and I also know someone that is taping small pieces just above her ears.

Comment by Sad in chicago on November 17, 2015 at 7:39am

Ladies, I am curious about the tape thing. My loss is about 2-2.5 inches in front, but I have a little forehead so for me quite far back, and about 1-2 inches on sides and around ears.  I have been wearing a custom topper purchased at J.Krause in Skokie for two years now (same Follea piece, taking amazing and extra care with it, as so expensive) successfully (not really if you would call really successful as most people don't know, but I am STILL freaked out by how sometimes I think it looks fake - even tho human hair).  But the front clips often come lose as that is the thinnest hair.  I do "backcomb" hair in the spots where clips to fit giving it a bit of substance in those areas.  When you tape does the piece stay on all the time or do you still remove nightly as I do with mine with clips. BTW - I did mess around with some medication, Rogaine and some cortisone initially, but have given up and tried to think I am more healthy for doing so.  The piece seems to be doing the job, but my life has changed.  Hate mornings before I put it on, hate for my husband and grandchildren if they sleep over to see me, can't really sleep in clip on as so uncomfortable and gets out of shape, can't feel comfortable in gym, summer, swimming or sweating.  Wind not my friend either and recently tried going to a resort and had a breakdown during the day.  I do have a couple of less expensive synthetic pieces I tried working with, tried cutting and styling the same way everyday better piece is, but feel I look different in them so worried people will know.  This sucks.  BUT, I am able to present myself to the world on a daily basis kind of feeling OK which I think is all I can ask for!  UGH how did this happen?  So funny that I am a breast cancer survivor who did not need chemo and never lost her hair.  And now this.  I would have felt better if I had something where I was bald but at least it would grow back.  I almost envy (sick as it sounds) those poor people.  OK done complaining.  Putting on my Follea piece, trying to style it, and moving on!!!!!!!!

Comment by Jen on November 17, 2015 at 1:02am

Wyobalance,

I did mean pulling hair from the hairpiece. What you have done is exactly what I would like to do for myself. I lost at least an inch at the forehead and a bit more on the sides and above the ears. 

Comment by Marian on November 17, 2015 at 12:25am
Marilyn- I live in Calgary Alberta. No where near Michigan! I went to Compassionate Beauty here in Cagary for my hair replacement consult. Not sure if they have them in the States but it is a support and resource for medical "medical Beauty" issues. They work a lot with Cancer patients and do Alopecia clients as well. They do medical tattooing, wigs, massage, make up lessons etc. The piece that I would have made would glue/tape onto the areas where the hair loss already is so no shaving required. I think even with that should I do it when I know the FFA burns out (beginning to think that's an urban legend) I will probable need a topper to supplement where the hair on top has thinned out. I used to complain about having to take too long to dry my hair because it was so dense....thanks to you and all the other posters for being so generous with your info. I am going to look up hair direct out of curiosity.
Comment by Wyobalance on November 16, 2015 at 11:24pm

Oh heavens, I would not pull out any of my hair Jen.  Or maybe you mean pull out hair from the hair piece.  I might have more loss than you have.   I just put little pieces on the scarred areas.    I get medium dense pieces from hairdirect.  They have minimal dense to very dense pieces.  Toppers - it's hard to find professional places.  We should have a database for the best places in the country instead of all this trial and error stuff.

Comment by Brenda, IL US on November 16, 2015 at 10:11pm

Marilyn-Your hair looks great in your picture.  I'm trying to find a place near me to have a topper made.  Not having much luck though.  

Comment by Jen on November 16, 2015 at 7:34pm

Wyobalance,

Great that you found a solution. I was thinking along the same lines but wondered if the strips of hair would be too dense for the hairline. did you have to pull out some hair?

Comment by Wyobalance on November 16, 2015 at 7:26pm

And, good hair addition specialists are gold, but not easy to find.  Lucky you.   

Comment by Wyobalance on November 16, 2015 at 7:24pm

I use a blue tape on a roll from hairdirect.com.  I don't put tape on the whole piece.  Each piece is about 2 1/2 inches by 1/4 inch.  I put a tiny square of tape on each end and a tiny square in the middle.  This holds just fine and easier to remove, though I pretty much let them fall off in a hot shower at the end of the month.  I went to a wig place once.  They didn't understand when I said I needed one that works well under a bike helmet.  Ha.   

Comment by sallylwess on November 16, 2015 at 12:38pm

whobalance, thanks for your advice.  I think it is so important for us to find solutions that work for us.  Wig shops are mostly of no help because they just want to make a sale whether it works or not.  Anyway, that is my experience.  I go to a medical wig specialist.  She is compassionate, understanding, and works to find a solution that works.  I wanted to add that when I use tape on my hair pieces, I am careful to only attach to scarred areas also.  I don't want to do further damage to my scalp.  Where do you buy your tape?  What kind do you use?

 

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