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 Kath UK on August 25, 2013 at 5:21pm

Pam - about wearing your wig - I would agree with Debs about taking it gradually. You could try just pottering in the garden for an hour in your wig and then maybe a take a trip to the shops somewhere you don't usually meet people you know.
But honestly if you do meet anyone they're most likely just to think you've had your hair restyled and tell you it looks nice.
I went to a big family reunion at the weekend (wearing my hair piece) and several cousins I hadn't seen for years said I was 'looking good'. I felt a lot better about photos knowing I didn't have to wear a hat or a hairband as I've had to do in the last year or so.
People are not all that observant, I've found. It's just that you are very conscious at first that you're wearing a wig but you do get used to it and it's a great confidence- booster.

Comment by Liz on August 25, 2013 at 3:21pm

Debs, when you started wearing a wig did you get a headache? I get a headache after an hour or so which goes within a minute of taking the wig off, so I think the wig might be pressing on a nerve. Do you wear a wig cap underneath?
xx

Comment by Debs on August 25, 2013 at 11:59am
Pam, just take baby steps with wig wearing. I wore mine fir just about one hour the first time. I looked round some shops and sat diwn and had a coffee... The 2nd time was about a minth later, last Sept, i wore a wig on the tube into London. I meet 3 femake friends for lunch. I had told them i had FFA bit they had not seen me in "hair". I then wire a wig from Sept to Jan when i socalised with trusted freinds. This enabled ne to get used to putting the wig on and i built up my confidence. I only told my very closest fruends, my mum and my brother i wear wigs, so i would just say you dont have to tell anyone you fear may not be supportive. People will just think you have a new hairdo. They will not be tuned into the possibility you are wearing a wig. Have a couple of short trips out to places where you csn be anonymous a big city like London is great you csn just disappear in the crowds and do it a little at a time. The thought of wearing a wig for the first time is horrific.... The reality is it really is "much ado about nothing" .. Xxxxx
Comment by sammi on August 25, 2013 at 9:07am

Pam regaine has really helped regardless of the instruction I have said before it has increased the fullness of my hair I only apply round the front but Dr Harries uk said any left do the middle hairline! where I have no hair loss, I wish I'd used it earlier I bought it once and returned it after reading the instructions, but after two doctors told me to try it I'm so glad I did. My fringe is so much fuller and I intend to continue, best wishes Sammi

Comment by Pam on August 25, 2013 at 5:25am

The consultants I have seen in the UK have told me that Regaine is unlikely to work with the type of hairloss associated with FFA. i have looked at the packet instructions on the Regaine, and it specifically says that it is more likely to work for women with top parting hairloss, not the frontal scarring type. I am concerned that initial use of Regaine can cause the hair to fall out - it should grow again, but maybe in our case it won`t! Then I`d be even worse off!
I have recently started taking turmeric thanks to all your advice, and think it has helped the inflamation a bit, and can`t do any harm.
I do worry slightly about the longterm use of hydroxychloroquine. Does anyone know about any know side effects of long term use? My consultant has said that i just need to get my eyes tested every year, as in a few rare cases it can affect vision, but otherwise just keep taking it for ever!
(Am very nervous about wearing my new wig! It is sitting upstairs, and I am just looking at it, trying it on at home, but not daring to go out in it!!! Help. I can`t face the comments I might get from friends and family when I firt venture out in it.)

Comment by Debs on August 24, 2013 at 11:47pm
Hi silversurfer the brand name is HEALTHWIZE it is made in the USA and the supplement is just called herbal HRT.

Terry fantastic idea about rogaine. I know that minoxidil is the only drug that is proven to prevent hair loss. This company has plenty of money to use in research for us too.
Comment by Liz on August 24, 2013 at 6:48am

Sounds an excellent idea Terry :o) x

Comment by Celia on August 24, 2013 at 6:34am

Well done Terry ! I am thinking about this ! X

Comment by silversurfer on August 24, 2013 at 2:06am

What is it called Debs

Comment by Debs on August 23, 2013 at 5:45pm
Ladies i know a few people that use herbal HRT to help with hot flushes. It is a herbal alternative to the regular HRT that doctors prescribe. A company called healthwize make it. It is supposed to really work.
 

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