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 KarenGinny - Iowa, US on August 12, 2015 at 8:42pm

My forehead is very much lighter where the hair loss is, also at the temples and in front of my ears. The headbands do cover my temples but not the area right in front of my ears, but I wear glasses so I think it hides it fairly well. At least no one has asked me about it anyway. I do have a thin strip of fine hairs at the very front and sides of my former hairline and then it goes bare after that - Like a line of hair that still grows but bare behind that. I started shaving the very front on my forehead so at least I don't have this weird strip of hair. My eyebrows have thinned but are mostly still intact. I've been on methotrexate to help with inflammation and my scalp is a little ichy sometimes but not sore.

Comment by KarenGinny - Iowa, US on August 12, 2015 at 8:25pm

Here's a pic of me on vacation at Carlsbad Caverns, New Mexico, wearing a headband across the front with my hair down.

Comment by Lo on August 12, 2015 at 2:47pm

Sad in Chicago - are you taking any medications/treatments?  I recall prior posts, but cannot remember who said what.  How much have you lost - and is it mostly from front/top hairline - or more loss at temples and down by the ears?  Just curious...

Karen - I would love to see a recent pic.  I've seen your posts in the past - and you always have a positive comment!  Thank you for that - and send that picture!  They are easy to upload onto this site. 

Comment by Sad in chicago on August 12, 2015 at 2:30pm

Lo -- take the hairpiece to a good hairdresser or wig maker and they will "style" it for you so it blends with your natural hair.  That is the point.  Real hair should be easier to work with.  Just tell them to be careful and go slowly cuz if they cut too much no growing back!  With the money you spent, you should be happier.  I have a real hair one for day time, work, and most occasions, but recently bought a similiar synthetic for exercise, pool, walking, etc. My hairdresser cut them the say way so they don't look like I have two different styles.  Yes expensive and yes a pain in the butt, but I have NO CHOICE.  Being totally bald might ultimately be easier than camoflauge.  Further, the FFA is so unsightly with the way the hairloss exhibits itself all back from the face.  

I tried headbands for a while but the loss is too great to work with it in the front.  Also my forehead is so white compared to the rest of my facial skin that I look kind of like a freak!

Comment by KarenGinny - Iowa, US on August 12, 2015 at 2:18pm

I wear headbands sometimes. I have a lot of hair loss- bald patches at temples, all over the front that goes back about 2 inches. I've grown my hair longer and pull my bangs forward which hides most of it, but they are thin and I know you can see through them to the bald areas. So I find headbands one way to cover it and they stay on pretty well. I've bought many different kinds and some are too tight and give me a headache,and some too loose, but some have been good. The rest of my hair is fairly thick - although not as thick as it used to be, and curly. I wear the headbands sometimes with my bangs under them and sticking out the front - but they sometimes slip, or wear them against my forehead with my bangs coming over the front and sides. It doesn't cover my temples but it looks better than going without and having the wind blowing my hair all over. I will wear a baseball type hat too, but then again, those can blow off. I've never tried a wig or topper- they sound very uncomfortable.  I will try to post a picture if I can.

Comment by sallylwess on August 11, 2015 at 10:37pm

I have not found headbands to be very successful.  I did at first about a year ago, but then I lost hair at the back of the head near the crown and the headband did not cover that.  I also can't keep them in place because I have lost hair at the back of the head.  I also spent an arm and a leg for a human hair topper that I don't like because it doesn't match my hair well.  I've taken two wigs and cut them down to be a topper. I can them my wig hacks.  I sewed in clips.  They are adequate and work better than the human hair topper.

Comment by Lo on August 11, 2015 at 10:33pm
Hey April. I do not wear head bands unless I swim. The idea is (I guess)to either pull some bangs forewars and have them stick out of the front of the headband ... Which is what I do. It helps also that I generally always have my 2 side pieces taped in above my ears so that there is hair in that area (otherwise it would look totally bald above my ears s d no hair to come out of the sides of headband. But it's doable. As far as the hair piece, I was charged sn arm and s leg when first diagnosed in december... And got s hairpiece that is lovely but just not sure j will ever wear it. It is human hair. It sits on top of my head and there are clips to secure it. It does have bangs so I just clip it to the hair at my bangs (whatever you may have left) and skip it along the sides and back. It stays put. So they do work... Just not my favorite.
Comment by April on August 11, 2015 at 9:31pm
Ladies who wear headbands: do you feel you can completely hide your hairloss with the headbands? Also, I keep trying to figure out how a hairpiece can cover the hairline? I know some use hairpieces but I'm just having trouble picturing it.
Comment by April on August 11, 2015 at 9:28pm
Little sad eyes,it looks like you still have your widows peak. That might be a good sign that it's not FFA! I lost my widows peak area first. Also, sounds like you still have some peach fuzz on the bare areas. Mine are totally smooth and shiny. Anyhow, keep us posted on what you find out. Sounds like the Rogaine is working: )
Comment by Rachel218 on August 11, 2015 at 8:20pm
LSE I definitely notice more burning and hair loss at the time of my cycle.
 

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