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 Jules UK on May 22, 2014 at 5:00pm
Hi, I can't reply regularly at the moment since there's no wifi in the cottage we're staying at.
My hairpieces need some fine-tuning. For me, I wonder whether synthetic would be better than human hair since my own hair is quite fine and silky. Also, the positioning and shape is not quite right but I can go back to a Rob to sort that out.
I can't stress enough how much this has helped both appeance and confidence. I no longer wake in the morning and instantly reach to cover my bald bits!
I have a roll of wig tape to refresh when necessary, but apparently, there's a breathable wound dressing that allows the hairpiece to stay in place for weeks. I really don't know it's there! X
Comment by Jen on May 22, 2014 at 4:30pm

Hi Pam,

Thanks for your comment. You have had your pieces for a few months now so I am happy that you have gotten accustomed. Are the edges (here they meet your face) invisible or visible? Can you comb your hair back and have a natural look? I live in Canada and I am not sure where I can get a service like what you and Jules were able to access.

Comment by Pam on May 22, 2014 at 4:21pm

I am still very pleased with my hair pieces, and have got used to them. They have really helped my confidence a lot. Just had a photo taken on a windy ferry to Calais, and it was wonderful not worrying about bald sides and hairline!!

Comment by Jen on May 22, 2014 at 3:58pm

Hi Jules,

Thank you for letting the group know about the hairpieces. I was thinking of you only yesterday and wondering how you were doing with it. You must have heard me thinking.  How do you think the piece would have worked if it was placed in a more conspicuous place. You mentioned that you still comb your hair over the piece. My hair loss is at the temples mostly with a bit at the top.

Comment by Jules UK on May 22, 2014 at 2:28pm
Hi all, thought I'd let you know about my new hairpieces. I'm "lucky" in that my hairloss so far has been from above my ears mainly so I can still cover it with my own hair. I've had made 2 pieces that fit onto the bald patches. From Pam's hairdresser in Cheltenham they stay wonderfully secure and can be washed and dried. I plan on leaving them in place until I see my hairdresser in June. They have made a huge difference to me! I no longer feel like I'm hiding something, even though I still am... They tend to be frizzy because of course there are no natural oils, so I apply Boots Botanics serum which tames them. I call them my spaniel's ears!
Interesting about Elizabeth I. But I think her hairloss may have been connected to using lead makeup. Still, if only we could start a similar fashion trend with high foreheads!
Best wishes from rainy Cornwall. X
Comment by Classical Anne in NC mountains on May 22, 2014 at 12:14pm

Mandy, thanks for the long anticipated encouragement!  We all want to know someone whose condition has stabilized.  So happy for you.

On a historical note, I imagine many may have already noted the obvious resemblance to FFA seen in portraits of Queen Elizabeth the First, of 16th century England.  Just thought I'd share with you a link to a series of her portraits, as it appears she was already losing hair at a very young age.  In 1546, when she was just 13, she had begun looping her side hair forward, in an attempt to cover the bald temples.  Just for fun: http://www.luminarium.org/renlit/elizface.htm

I suppose it's a plus to be related to Royalty?!?

 

Comment by Mary on May 21, 2014 at 6:26pm
Great news Mandy. Encouraging. Thanks for sharing
Comment by MJ on May 21, 2014 at 6:12pm
Mandy, that is so exciting and encouraging! Thanks for sharing your good news. MJ
Comment by Mandy on May 21, 2014 at 5:20pm
Ladies just had to share.Saw consultant today.No signs of more hair lose new hair growth was confirmed. Biopsy showed no Lupus antibodies and very small signs of active FFA. He feels it is very very slow progressing or maybe starting to burn out. He has discharge me and told me to carry on what I am doing because it is working for me. I can see him any time in the future if I have concerns. I was diagnosed with out a biopsy last March but this new consultant wanted the biopsy so the took three samples in February. I have not taken any medication since January 2014 but use Protopic now and then.I do use teatree and rosemary oil once a week, Healthy diet, Lots of walking and a multi vitamins etc. I know this May be only short lived but it's all good for now
Comment by Kaz on May 21, 2014 at 3:53am
Hi MJ
Thankyou for sharing , i will let you know if it slows down within the next 6 mths being on this healthier eating regime , fingers crossed or I will be searching for wigs :(
I have already had my eyebrows tattooed and it was the best thing.
Here's hopeing everyone's treatment works x
 

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