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 Liz on June 27, 2014 at 1:51pm

The skin where I have lost my hair is pale and does not tan. I have read that skin which is scarred is more prone to skin cancer so I wear a hat when I go out. Also when the skin on my face tans, the white stripe on my forehead looks more noticeable x

Comment by Mareea on June 27, 2014 at 1:19pm

Catherine, I have no idea why your Dr suggested sunburn as a trigger. I live in Adelaide Australia where the sun blazes for months. If sunburn was a trigger then there would be a significant statistical variation in the incidence of ffa in this city and that is simply not the case. Enjoy Morocco.

Comment by Annie on June 27, 2014 at 10:14am

Catherine, I am very careful with sun exposure and don't think I've ever had a sunburn on my face in my life.  I don't think it has anything to do with my ffa.  It's interesting that the doctor suggested that a sunburn might have something to do with ffa.  I've often wondered if it has something to do with the ingredients in sunscreen since I've always been diligent about applying on my face right up to my hairline.  Have fun in Morocco.  I'm totally jealous!

Comment by Catherine on June 26, 2014 at 4:54pm

Hi ladies,

I wanted to ask you about being in the sun with FFA. I have been very cautious ever since I was diagnosed with the condition back in November 2012. Stupidly, I got sunburnt in the summer of that year, and a leading dermatologist even suggested that this could have triggered my FFA. Is this something that has ever been suggested to you?

I am about to go to Morocco and I am a little nervous about being too exposed to the sun. I notice that my scalp gets very itchy when it is hot. I have several large scarred areas around the hairline, and my forehead is somewhat scarred in places too, with areas of pockmarks. Will these areas be extra sensitive? Should I cover up completely or is it ok to be out in the sun a little bit (with lots of sunblock of course)? 

Thank you so much for any advice you can offer!

Catherine xx

Comment by Celia on June 25, 2014 at 6:34pm

Jess - thank you - it's just a matter of time and we must all be hopeful ! How did you come across this news ? x

Comment by jess on June 25, 2014 at 3:58pm

I know I am very excited about it!!!!  :)

 

Comment by Jen on June 25, 2014 at 11:59am

Thank you Jess. Great news. Great hope.

Comment by MJ on June 25, 2014 at 11:51am
Jess, thank you for sharing this! The bottom line that it apparently turns off the attack on the hair follicles gives great hope!
MJ
Comment by jess on June 25, 2014 at 10:41am

I wanted to share some hopeful news with all of you!

please read:

http://www.ibtimes.co.uk/tofacitinib-citrate-arthritis-drug-that-cu...

 

Comment by Debs on June 16, 2014 at 4:17am
Please check out "wearing wigs/hairpieces" discussion if you are in the UK. I have posted details of salons that make hair systems/pieces that members of our group have already used so we can safely recommend them.
 

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