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 Debs on January 24, 2013 at 3:43am

Minnosotamom, Please do inform your derm that Black women (indeed females of all ethnic groups) get FFA. I am Black, Lace has already responded to you on this forum and I know of another Black British lady that has FFA. So out of a total of 32 females that I now of with FFA - 3 of us are Black. This condition is exclusive to women that is about all that can be said of it and age appears to be a factor. Welcome to the group, Deb xxx

Comment by Liz on January 24, 2013 at 2:51am

Good morning everyone :o) I hope everyone has a lovely morning, evening and night. I'm off to work in a minute. Can I ask 2 questions. 1. Do those who have whispy bits of hair where thier hairline once was, shave those bits off? And how long do they take to grow back and does it irritate that part of the scalp? And also, Who else suffers from allergies? I have excema, hayfever, allergic rhinitis and asthma. xx

Comment by Judy on January 23, 2013 at 11:11pm

Another question. I'm going to try Biotin - does anyone else take it? I know these things can be false hopes, but why not?

Comment by Judy on January 23, 2013 at 10:58pm

Hi, I agree about antibiotics destroying your bacterial balance. I always take the probiotics if I MUST take an antibiotic. Recently I asked my doctor what I could do to improve setting off this aauto-immune disorder. She recommended probiotics and stree reduction. I had not considered taking probiotics all the time. Thanks for the reminder.

Comment by ElleMN, USA on January 23, 2013 at 10:39pm
Hi Lace! I'll let my dr know about you; you'll debunk her theory. Another thing she told me was that this was first diagnosed in 1994 but that in the last few years there has been a huge upswing in cases. Why now?
Comment by ElleMN, USA on January 23, 2013 at 10:18pm
Dr H also has me switching between the DHS and H & S classic clean, and shampooing every day (normally I would shampoo every 2 or 3 days--these Minnesota winters are pretty dry).

PJ-- interesting take on antibiotics; I have the opposite hypothesis. I was taking antibiotics a lot and I think I messed up my body's bacterial balance. I've been taking kefir to try to boost my good bacteria. Have you heard of the Human Microbiome Project? Just another thought to try probiotics.
Comment by Lace on January 23, 2013 at 10:13pm

To Minnesota Mom:

I'm Black, and i have it; it could be more prevalent with people of European descent, but it's not exclusive to them.

Comment by PJ - MN, USA on January 23, 2013 at 9:00pm

PamW - it is the Classic Clean 1% zinc for the Head & Shoulders. The DHS shampoo has 2% zinc in it.

Ellen and I see the same Dr. Which is very interesting hearing our different treatments, but yet some of our early symptoms and such are very similar. Good to hear you have had the dents dissapear that soon. I've had mine 1 1/2 months now and no signs of dissapearing. I use the generic Retin-A on my face for my rosacia and the bumps that go with it. So far I don't see a change. Still have bumps and a red face. I've been teased since I was young about my red face and how easily I get "embarassed". My rosacia has bothered me more over the years than the hairloss. I really feel that FFA is caused by something in our environment or a chemical in a product that we have used or ingested. I have been on antibiotics alot over the years. I wonder if that has helped in keeping my FFA from being as advanced as others that have had it as long as me.

Comment by PamW San Diego, CA, USA on January 23, 2013 at 8:24pm
PJ, if you get a moment could you look at your H and S shampoo and tell me what percent zinc is in it? Is it 1%? Thanks. There are so many formulations of Head and Shoulders, I want to make sure I have the right one.
Comment by PamW San Diego, CA, USA on January 23, 2013 at 8:21pm
Welcome, Ellen. I also read that it affects people in upper income brackets so maybe it is a lifestyle or diet issue, too. I also read that people with one autoimmune disease are prone to other auto immune diseases. I always had stiffness in my joints and red cheeks. Now I know that these are all signs of inflammation in our bodies. I like when we share what our doctors are actually saying and doing for us. The only common thread I have picked up so far is that everyone is different and there is no telling how bad we will get or if we will improve like PJ. Good luck to you and keep sharing!
 

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