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: Nov 25, 2024

Discussion Forum

Food Allergy Testing question

Started by NorthCarolinaMama. Last reply by lordiron Nov 25, 2024. 10 Replies

Hello!I was wondering if anyone has been tested for food allergies to determine if a particular food is causing inflammation, which in turn could exacerbate FFA. I had the skin test a couple of years ago at an allergy clinic, and it came back…Continue

CARF Conference 2018 Notes

Started by CurlyK. Last reply by kevinsstelly Jul 14, 2024. 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

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Comment by Anne Louise on April 15, 2014 at 2:40pm
Hi ladies, I just wanted to thank you for your encouragement for me on Eyebrow Day. Unfortunately after arranging child care and driving an hour to get there, my appointment was cancelled! I wanted to cry and scream all at the same time. Now I have to wait until the 30th. She apparently left a message yesterday cancelling (she has pneumonia) but I did not get it. Pencils for two more weeks. : (
Comment by KarenGinny - Iowa, US on April 15, 2014 at 1:50pm

Rita, I've tried the plastic headbands but they don't sit right on my head and since I wear glasses, it just gave me a headache. You could also wear the fabric headbands more on top of your head, holding down your bangs if you have them. This doesn't look so good on me since my bangs are rather thin. I pull some of the back of my hair out from under the headband so it sits more smoothly and all you see is the front of it. I can also put my hair in a ponytail and wear the headband across the front for a cooler sporty look. I just heard about a website that sells headbands made from a swimsuit like material that look nice called Bolder bands - bbolder.com - but have not tried them. Look like they would be good for sports or swimming too.

Comment by Rita - Canada on April 15, 2014 at 12:01pm

While in Target the other day, I noticed quite a wide hair band made of plastic and covered with material and wonder whether it would slide back and forth but I am going to pick one up and hopefully it will stay in place and cover the frontal area.  It does not go under the back of head but merely over the top of head to the top of your ears.

Comment by KarenGinny - Iowa, US on April 15, 2014 at 11:37am

Hello to all, I haven't been on here as much lately, but do still follow along. Anne - I hope your new eyebrows come out well and it helps to boost your confidence. I know I hate looking into the mirror and seeing how bad my hair looks, and always trying to cover it up. I've never met another woman with FFA so I don't really have anyone around who understands. I don't know if my Dermatologist would be able to share that information. April made the comment about her hair being big, curly and wild, and I too have curly hair that would make it hard to match a hairpiece to. I just style it with long bangs and use lots of hair spray, but when outside in wind I usually wear a hat. I also wear stretchy material headbands that I wear under my hair, hiding my hairline and it covers my forehead and temples, with the bangs falling over the front of the headband, and my hair is about shoulder length right now. This helps also when outside or just going in and out of stores, since the wind always wants to pick up my hair and blow it all around. I wonder what else people do to hide their hair loss. Thank goodness I live a fairly casual life style, because the headbands give me kind of a bohemian look, and not very professional. I'm a stay at home mom with two sons so it works for me. I'd love to hear how others cope with this.

Comment by Celia on April 15, 2014 at 3:15am

Anne - good luck and a steady hand to the artist ! You will be fine and very glad you had it done.  Pencilling in eyebrows can only work for a short while I think.  I had mine done 17 months ago and need to go for a top up soon I think - I will go after Easter hopefully and maybe catch up with you Deb at the same time.

I do think having the support of others in the same boat is so important.  I know that on this site people come and go, probably having decided they no longer need it.  We have had, as you can see, 145 people who have used this group, but I guess probably only about 30 now communicate and sadly there are more folk joining us.  Not a good thing to have, this FFA !  Hope your day is good. x

Comment by Debs on April 15, 2014 at 1:31am
April you might find it helps if you can attend support group meetings for alopecia or link up for a coffee informally with another FFA patient in your area. I would ask your derm to pass on your email address to other FFA ladies they are treating so you can meet in person if there is not already an alopecia support group set up. In the UK C very kindly has hosted 3 get togethers and I go to an alopecia UK support group where anazingly I have met 5 more ladies with FFA. Psychologically it is a great help to met other FFA ladies in person.
Comment by April on April 14, 2014 at 10:45pm
MJ, I have been thinking a lot lately about how most of the suffering of this disease is in the mind, as this is not physically painful for most. Perhaps the only way to overcome it is in the mind as well. Easier said than done I know, but I think things like yoga, meditation, and reducing stress help. I need to do more if that these days!
Comment by MJ on April 14, 2014 at 7:45pm
April, I can so relate to the feelings you are expressing. I was doing very well once I got past the initial shock, anger, anxiety. Changed my diet completely, read a lot of mind/body connection, and stopped close mirror exams, and really felt I had shut FFA off in its tracks. This past week, I had a glimpse in the rearview mirror in broad daylight and there appeared to be more loss...felt myself slip back a bit in attitude. Trying to get my mind back in control of my body. I guess ups and downs are to be expected!
MJ
Comment by April on April 14, 2014 at 6:27pm
Anne, if it makes you feel any better, my aunt just had eyebrow tattoos done and they actually look great! Very natural. I know it is so hard to actually face this reality though. I avoid looking in mirrors anymore because it stresses me out. Well, good luck tomorrow, and just remember that you are doing the best you can with what you have been dealt. Let us know how it goes: )
Comment by Anne Louise on April 14, 2014 at 3:26pm
April I have the same worry about my hair as it is thick and curly too. I'm getting my eyebrows tattooed tomorrow and I've been so emotional the past few days. When I made the appointment two weeks ago I was excited. Now I'm mad that I have to pay $650 to attempt to restore what I once had and sad to face the reality that my eyebrows are not coming back. The woman doing them is a true artist and I've looked at tons of pictures of her work, but I'm still nervous as to how it will all turn out. I know eventually I'll be glad I had this done, but I've been a bit taken aback by my sudden apprehension over it all. I wish I had some tips about how not to be too stressed over this, but it is all still so new to me. I guess denial has been somewhat helpful but facing the cold hard reality of tomorrow kicked that to the curb.
 

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