Alopecia World
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Frontal Fibrosing Alopecia
Information
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 0 Likes
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
Trying a new approach with CBD oil...
Started by Robin. Last reply by anettemandell Apr 20, 2023. 31 Replies 0 Likes
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 4 Likes
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 0 Likes
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
Comment Wall
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Comment by Celia on March 19, 2014 at 2:58pm
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Claire - thanks for that - say 5 mins each topic. This is just a sketch of what we might discuss before lunch and more relaxed nattering - hope OK.
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Comment by claire on March 19, 2014 at 11:52am
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Sounds a great list but how long have we got?? I'm particularly interested in the medicine that people have taken and any benefits/side effects. On going research is also really useful as it might give us all hope.
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Jules - re: agenda - haven't had any suggestions yet, but how about if we talk about
- meds /effects/improvements/weight gains ?
- dermatology visits, frequency, level and type of monitoring
- improvements felt to be linked to diet
- how to combat low self esteem/anxiety etc
- wigs/hairpieces
- current research - stem cell ?
Just brainstorming on my own whilst cutting the grass...........
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Valerie - I have sent you the postcode via the mail on this site - let me know if you don't get it !
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Claire - doxycycline is an antibiotic. Made me feel nauseous and I could not identify any benefits !!
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Thank you, would be very interested but my daughter is home from London this weekend. If you could send me postcode and I will have a think and see what I can do and get back to you. Valerie
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Hi Valarie, Welcome to the group-I have only been a member for a few months but find the support fantastic. I have not heard of the drug Doxy before.
Good luck-I like in East Sussex but used to live in Warwick. Claire.
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Mandy, Jules and Caro are in the B'ham area. Do you know how to receive e mails via this site ?
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Valerie - we are having a get together here at my home on Saturday - it will be our third and you are most welcome to join us. I live just close to the Beaconsfield turn off from the M40 so the journey is easy. There are 2 others coming from B'ham area. It would be lovely to meet you./ I guess you don't know anyone else with FFA - it can be a lonely journey on your own. Let me know and I will send you the postcode and details if you think you would like to do this - at present - there will be 8 of us including me. I am making lunch for you all. x
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Hi All, joined your group yesterday. Been suffering from FFA for two years and currently taking Doxy once a day. No other medication prescribed by Dermatologist. Thinking of stopping Doxy as it doesn't seem to help much.
I live in Birmingham so if there is anyone in the group who is local I would love to meet up.
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