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 Jules UK on March 13, 2014 at 7:07am
Thank you, ladies, for your encouragement! The tele-conference was really interesting. As first contact between steering group members, it was about clarifying roles and responsibilities, agreeing the scope of the PSP protocol,(as outlined briefly on alopecia UK) and setting the agenda for the meeting in London in May. The ultimate aim is to identify questions about treatment unanswered by research to date, and to prioritise them in order to approach "partners" who could secure funding for targeted research. The whole process will take 14-18 months, and we will be invited to participate in completing surveys to help narrow the issues that concern us most. It's an established protocol that has worked for other conditions such as acne and vitiligo. The group has dermatologists, a trichologist, a psychologist, a wig technician plus alopecia sufferers.
This is a bit of a ramble and probably enough for now. But I hope the process will produce real results in raising the profile of our condition and encouraging research!! Please have a think, in the meantime, about what survey questions would be important to us. The meeting in May will be about compiling the first online survey....
Jukie x
Comment by Celia on March 13, 2014 at 7:03am

Hi Claire - I will e mail it to you through this site. Celia

Comment by claire on March 13, 2014 at 5:33am

Looking forward to meeting all you ladies next weekend 22nd. Just wondered what the arrangements are and how will you let me know the postcode. many thanks Claire. 

Well done Jules for undertaking all this extra work- looking forward to hearing all about it.

Comment by Debs on March 12, 2014 at 2:58pm
Jules thank you for representing us at the conference. X
Comment by Caro UK on March 12, 2014 at 1:55pm
Good luck for tonight Jules. You'll be fine! Let us know how it goes xx
Comment by Jules UK on March 12, 2014 at 1:10pm
Thanks C! I'm a little apprehensive; there was a lot of paperwork to read through, but it's well summarised on the Alopeciaonline UK website. There will be an online survey for us all to complete, in due course. Incidentally, there's a survey and opportunity for face to face interviews on www.survey.bris.ac.uk/nottingham/alopecia. It's a research study into everyday psychosocial experiences of alopecia sufferers, run by the University of Nottingham.
C, I'm also looking forward to our get-together. If you'd like a contribution to the table, let me know! X
Comment by Celia on March 12, 2014 at 12:47pm

Jules - I hope your Wed evening conference goes well.  Well done for doing that.

I am so looking forward to seeing some of you on the 22nd.  If there are any ladies who find they can now be free to join us on that day, please let me know. x

Comment by Caro UK on March 12, 2014 at 6:10am

I went to Cathy Brown for my eyebrows - she has an aesthetic beauty clinic in Mitchells Sutton Coldfield, West Midlands. She is a semi-permanent makeup and medical tattoo artist.  She trained with Nouveau Contour and is now one of their training team and teaches medical tatooing when she is not treating clients. Cathy is absolutely brilliant, great at putting people at their ease and really skilled. I'd thoroughly recommend her for anyone that lives in or around the West Midlands. www.cathy-brown.com

Comment by Debs on March 12, 2014 at 5:33am
Hi Jean, I go to Belinda Hayle too. She did my brows and my eyelash enhancement too. I am delighted with her work. I went to Belinda a year ago and am still happy with the effect. I am going back soon for a top up to my brows. I can thoroughly recommend Belinda. Her salon is in Chertsey, Surrey. www.belindahayle.com
Comment by Jean on March 12, 2014 at 5:24am

I had my (non-existent) eyebrows tattooed by Belinda Hayle last year.  Although expensive, it was the best thing I ever did!  I'm so much more confident and it's great that I can swim, do a gym workout, dance etc. without fear of loosing part of my eyebrows.  With absolutely nothing until the lovely Belinda worked her magic, my brows often looked like Morse Code, where perspiration removed patches of eyebrow pencil!!!  Although my brows are now a little lighter, I hope to get another few months out of them before I go for a top-up.  Might even go for the eye liner as well next time. 

 

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