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 Celia on February 27, 2014 at 5:50am

Hi Liz - are you joining us on the 22nd. Celia

Comment by Liz on February 27, 2014 at 5:28am

Hi Debs. I wasn't born by C Section and neither was my mum x

Comment by Debs on February 27, 2014 at 5:23am
Dysbiosis in gut caused by being born by C section. I just saw a discussion on TV where a doctor spoke about dysbiosis (this means your bacteria in your gut has the wrong type of bacteria and is harmful ) when you are born by C section, which I was back in 1963, you do t receive your mothers healthy gut bacteria during birth and this lasts a lifetime and is proven to cause obesity, Crohns etc.. Your immune system is affected. It just wonder his many of us with FFA were born by C section ?? This might just be a coincidence but since I was born by C section I wanted to ask the rest of you ladies.
Comment by Meme on February 27, 2014 at 4:22am

Hello C

I would be interested to hear about medication that everyone thinks has or hasn’t worked. Also ideas and experiences on how to deal with the hair such as weaves, wigs etc; it would be good to get everyone’s thoughts. 

meme

Comment by claire on February 26, 2014 at 5:44am

Dear MJ,

I also take antihistamines every day and have had allergies all my life. No one has ever found out what causes them. On 3 occasions I have been in hospital and they tell me it Idiopathic anafelaxis- very frustrating. Maybe this would be something to discuss at the get together?

Comment by Celia on February 24, 2014 at 6:00am

               

Jules, Pam, Polly, Caro, Claire, Meme and also Cathy are all OK for Saturday 22nd.  Please let me know if I have missed anybody - just updating you.  Thought we might try an agenda for an hour or so - not toooooooooooo formal before lunch !  If you have any items for this, please let me know.  Thank you !

Comment by MJ on February 20, 2014 at 4:31pm
Thanks. I will look up Dr. Price. I would like to know if anyone in the states is planning on attending the CARF conference in Chicago..I would like to attend but will not be ablr to.
Comment by Debs on February 20, 2014 at 9:05am
Dr Vera Price in the USA thinks FFA results from an environmental insult and is researching the role of dioxins. Dr Price is part if the CARF organisation and this info was passed to me from one of our group in the USA that has attended support group meetings with Dr Price. Research is happening into a trigger.
Comment by Meme on February 20, 2014 at 8:51am

Hello Claire

Sorry for the late reply, had to take daughter to the eye clinic. I live in Suffolk near Bury St Edmunds.

Will look into the products mentioned. When I met Dr Chris he took a file of blood to check my iron and other vitamin levels. It will be interesting to see the results.

meme

Comment by Jules UK on February 20, 2014 at 7:00am
I use Superdrug's own brand Hair, Skin and Nails supplement. The ingredient list is identical to that for Perfectil which is far more expensive! Dr Harries said that any supplement should contain biotin, otherwise he didn't particularly recommend anything. I haven't noticed any change in my nails, but that's probably due to the perverse nature of FFA rather than extra vitamins.
I've had notification that the 1st steering group is to meet in the last week of April, with a telephone conference in March. I don't yet know what the agenda will be but may be asking for comments in the near future.
 

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