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: 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

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Comment by silversurfer on August 23, 2013 at 1:44am

that sounds just like me maddy. Sometimes I look as if I have run a marathon .my hair dripping wet. I will have to try taking turmeric to see if it makes a difference

Comment by Maddy, California, U.S. on August 22, 2013 at 9:56pm

I also get the head sweats really bad! It's always right around my hairline. Sometimes it actually drips. I get hot flashes too, but none of my friends ever get the hairline sweating. It must be connected to FFA. I am taking Turmeric too and have possibly also noticed a bit of a decrease in the hair sweats, but I can't be sure just yet.

Comment by Brenda, IL US on August 22, 2013 at 9:28pm

My head and face sweat profusely too. But i also have hot flashes. I went through menopause about twenty years ago due to surgery. I blame the flashes on lupus. The head and face sweats on menopause. Don't know what the causes are. But definitely uncomfortable and embarrassing.

Comment by silversurfer on August 22, 2013 at 3:24pm

I used to drink diet coke every day but have stopped now. Could that have contributed to my FFA. Also my head sweats profusely and feels like menopausal sweats.

Comment by Brenda, IL US on August 22, 2013 at 3:18pm

Thanks Annie and Kathleen. BVO (brominated vegetable oil) is only in citrus and orange flavored sodas according to websites I've read. It was in some Gatorade drinks but Pepsico has since removed it.

Comment by Kathleen on August 22, 2013 at 1:43pm

It's Twinlab Norwegian cod liver oil. I keep it in the fridge and take a teaspoon twice a day with orange juice -- you barely taste it.

Comment by Annie on August 22, 2013 at 1:32pm

Brenda, it's interesting that the BVO in soda might have a link to autoimmune diseases. I got hooked on Diet Coke when I worked at a golf course ten years ago and free soda was one of the perks of the job. I completely gave up soda three years ago because it didn't fit into my healthy lifestyle, so it isn't contributing to the FFA now.

Comment by Brenda, IL US on August 22, 2013 at 11:46am

Hi. Hope everyone's well. Carol, working as an extra must be exciting. I have the same problem you do with only a little hair hanging over my ears. The left side is worse than the right. Anxious to learn what you decide on, topper or wig. I'm in southern IL and humidity's bad here too (helps the corn grow} but not as bad as where you live. My face and head sweat so much now that i don't think i could stand a wig. Curious about what brand of cod liver oil you're using Kathleen. I'll try anything. I didn't have itching until this spring. Guess that's why my bangs have fallen out so bad. Had third round of injections tuesday. Seems like the itching is worse after getting them. My daughter showed me an article that said BVO in some beverages can cause auto-immune diseases. I'm a Diet Mountain Dew addict. I'm going to try to quit drinking them. I ordered the WonderBrow (believe it's quite similar to SmartBrow) last year but the blonde was too dark. Sorry for writing a book. Have a great day.

Comment by Annie on August 22, 2013 at 10:51am

Hi all, Wanted you to know that I received my order of SmartBrow that Christiekd recommended and started using it this week. I haven't quite gotten the hang of it, but I love it. It's not like traditional eyebrow pencils that draw a line, but coats every little hair to make your eyebrows look fuller. Christiekd, you're right, it looks very natural. My only issue with it is that the brunette color runs a little dark. I have medium brown hair with golden brown highlights and have always used a light brown eyebrow pencil. SmartBrow is pricey ($29.95), so I called DermStore's customer service line to let them know that I felt like the brunette color was too dark. The customer service rep couldn't have been nicer. She offered to ship me the blonde color at no charge and I don't need to return the one I have. Is good customer service the greatest, or what??? Anyway, ladies, if you're in between colors like me, you may want to order the lighter shade.

Comment by Kathleen on August 22, 2013 at 7:53am

Hi everyone. I have been diagnosed with FFA and started losing my eyebrows about a year ago. Until recently my scalp itched horribly though I have not started losing scalp hair yet.About six months ago, I started on Plaquenil and that has helped. BUT HERE'S WHAT I WANT TO TELL YOU: three weeks ago I started taking a teaspoon of cod liver oil 2/x per day and the itching has finally gone away. I don't think it's a coincidence. I took the fish oil for arthritis pain but it has had this other welcome effect. My FFA does seem to be arrested though one never knows. Anyway, I thought some of you might want to try it. All the best! Kathleen

 

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