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: 599
Latest Activity: Jul 25

Discussion Forum

Dermatologists who specialize in alopecia?

Started by NorthCarolinaMama. Last reply by LauraLGiraldo Jul 25. 2 Replies

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

Food Allergy Testing question

Started by NorthCarolinaMama. Last reply by DragonandFox Jul 22. 11 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

Hair Toppers

Started by Leni. Last reply by Lang Bozic May 22. 10 Replies

I am interested in getting a topper but don't know where to go for one. Having one of those weeks when the hair keeps falling and I am not feeling very comfortable. I don't want to spend a lot of money. Thinking of ordering off the internet. Please…Continue

Get Ahead of Hairloss Event plus new information on FFA

Started by Liz. Last reply by Carol Aug 7, 2025. 11 Replies

Hi I don't post on here much so I may well be giving information which you might have been discussing already. Are any of you in the UK going to the Get Ahead of Hairloss event in London at the end of September? It has been organised by Dr Wong who…Continue

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Comment by Brenda, IL US on August 23, 2013 at 5:07pm

Thanks Debs! My hairstylist cut my hair shorter yesterday because of the hair loss. I think the scarves would work now. I'll give those a try first and maybe try a wig this winter. Carol I'm so glad your husband didn't even notice you had a wig on! I sweat horribly when i try to put makeup on. Doesn't matter what time it is. I wonder if this has anything to do with taking resveratrol. I'm trying to take so many new supplements now.

Comment by Debs on August 23, 2013 at 6:42am

Brenda, I can see that the humidity where you live would make a wig very hot indeed, luckily in the UK our colder climate is a real Godsend if you wear 'hair'. I wear a silk scarf, a long thin shape wrapped round my head basically in the same place that a headband would go and tie it in a double knot in the front and then just tuck the 2 end in. In silk material it looks expensive and a fashion choice. I have several nice silk scarves I have bought to match different dresses/tops. If I use larger earrings than I normally wear and no other jewellery it looks good. The silk scarves cost about £15 in the UK at Accessorize shops, I expect you can get something similar in the US. Good luck with finding a solution. XX

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.

 

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