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 Liz on October 10, 2014 at 7:33am

I'm very wary about all injections, flu and otherwise. If you do have the flu injection Celia do so because you have informed yourself and decide to and not because the doctor suggests it, unless you are in a high risk category and having flu would be a major health risk.

Enjoy your meet up next week.

xx

Comment by Celia on October 10, 2014 at 6:40am

The flu shot apparently does NOT contain live viruses - it cannot give you mild flu just a sore arm.  I will go ahead and have this.  The nasal one they are giving to under 4s in UK does contain live viruses but they have removed the ones that make you sick. 

Comment by Celia on October 10, 2014 at 6:35am

Oh dear - I am due a flu shot in 10 days time.  I had one last year and spoke to my doctor about the probs |(extra) it might cause me - she said it would not be a prob for me - now I don't know what to think.....

If anyone coming to me for our get together next week on the 16th does not know how to get here - please send me your e mail address to my inbox on this site and I will give you directions - don't want to give them here for obvious reasons.  Look forward to seeing you !

Comment by Maddy, California, U.S. on October 9, 2014 at 9:38pm

Hi MJ, Well, I hate to say this, but I definitely think the flu vaccine was a trigger for my FFA. Mine started about a month after my first flu vaccine. There certainly could have been other factors involved....but whatever the mix was, I think the flu vaccine was a trigger for me. My immunologist told me no live vaccines and to be careful with other ones. My endocrinologist and my dermatologist (CARF recommended) both agreed that this could have been a trigger for me. However, I know that all our triggers seem to be different, so if you have not had trouble with the flu vaccine before...it probably isn't one for you. This condition is so crazy because it seems to be so different for everyone. Good luck making this decision.

Comment by MJ on October 9, 2014 at 9:20pm
Hi all, looking for feedback on annual flu shots. I just got a new job and found out that a condition of employment is a flu vaccination. In order to get an exemption, one must have documentation from clergy or medical exemption from a physician. My first flu shot a couple of years ago is on my list of possible triggers of FFA. Has anybody run into this with their employer and successfully gotten exemption, or can anyone assuage my fears of getting the flu shot?
MJ
Comment by Jen on October 8, 2014 at 3:44pm

Hello Ladies,

Just thought that I would pipe in about "THE FRIZZ". I have had difficult frizzy hair all my life. My hair is about 1 inch coils, very coarse and dry. I could never leave the house without a lot of product which ends up making my hair crispy. Recently, I have been using stuff out of my kitchen to calm  my hair. I wash my hair every other day and the night before washing, I usually slather it with coconut oil (olive oil if I do not have coconut). I then put  it in a bun at the top of my head and over the whole thing with a plastic grocery shopping bag and go to bed. Next day, I wash it out but I do not over wash it.  Then I condition, rinse and use a leave in conditioner. By the time it dries, the hair is softer. I never brush or comb my hair because it will result in a huge disorderly afro. If I could get rid of that nasty coconut oil smell then I would use oil in my hair during the daytime also and not leave in conditioner. I hope that this information helps. When I was a child, my grandmother spent many hours massaging all her grandchildren's skin and scalp with coconut oil. I think she knew something. 

Comment by Catherine on October 8, 2014 at 3:03pm

Thanks Debs for letting us know about the CARF meeting on the 14th of November. I will definitely go too!

Comment by Debs on October 8, 2014 at 1:17pm
I have followed the same idea as Liz re shampoo. I used organic for about 2 years but recently have gone back to Redken, I also dyed it last week. I have been wearing my own hair increasingly, with my wide headband/silk scarf round the front hairline. I am wearing a wig to work but in my personal life I am wearing myown hair as I have got used to 'styling' myself now.

Friday 14 Nov CARF hold their 2nd London patient support group. I went last year. If I am not working I will pop along.
Comment by Classical Anne in NC mountains on October 7, 2014 at 3:02pm

Hi Ladies, I have had the same issues with my remaining hair -- it is frizzy, limp, and totally uncooperative!  It is for that reason, rather than how far it has receded, that I now usually wear a wig to meetings and gatherings.  [Speaking of which, I hope your group meet is wonderful again!]

Celia, I have found that some form of Retin-A cream, which I get in samples from my derm, fills in the injection dent rather miraculously.  If I stop using it for about a week, it does tend to show up again.  But so easy to erase it with the cream.  And, of course, I'm still receiving the injections, so can't expect it to fill in naturally and totally until some time [perhaps a couple years] after I stop the injections.  But as I've said before, my little dent is barely visible to anyone other than my husband or derm, and is so easily covered with bangs.  I hope you can 'erase' yours soon!

Best to all,

Anne

Comment by Liz on October 7, 2014 at 2:12pm

Hi Terry. My hair is now frizzy and unmanageable however I was given some good advice by a lady with FFA and it worked for me. I told her how I changed to natural unperformed products and barely touched it through fear of it falling out. She suggested that maybe I was been too kind to it. So now I don't take any notice of what make my shampoo/conditioner is however I always use the conditioner that you have to leave on for 5 plus minutes. I also dry with one of those round brushes with soft bristles all round the outside. It's done the trick. My hair now drys flat and is not breaking off as much x

 

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