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 Valerie on March 20, 2014 at 5:00am

Really appreciate the invite to lunch/meet up but sadly hadnt realised how far down the M40 you were. Very interested in support group meetings so please keep me informed. 

Comment by Anne Louise on March 19, 2014 at 10:25pm

I'm very annoyed with this site!  I tried posting a new discussion and after writing a ton I clicked "add" and it disappeared.  Then I decided to add a picture to my profile, and as you can see it's upside down.  I can't replace it or turn it around.  I think it's time to call it a night.

Comment by Celia on March 19, 2014 at 2:58pm

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.

Comment by claire on March 19, 2014 at 11:52am

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. 

Comment by Celia on March 19, 2014 at 11:24am

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...........

Comment by Celia on March 19, 2014 at 10:50am

Valerie - I have sent you the postcode via the mail on this site - let me know if you don't get it !

Comment by Celia on March 19, 2014 at 10:47am

Claire - doxycycline is an antibiotic.  Made me feel nauseous and I could not identify any benefits !!

Comment by Valerie on March 19, 2014 at 10:40am
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
Comment by claire on March 19, 2014 at 10:04am

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.

Comment by Celia on March 19, 2014 at 9:47am

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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