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 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.
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

 

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