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 April on August 16, 2014 at 8:12pm
Alice, yes I wouldn't try that now! There isn't much I can do for the FFA right now. Just hoping it doesn't get too much worse
Comment by Linda from Cincy on August 16, 2014 at 8:04pm

Jean, I am not really fair-skinned either. . .more a light olive (I have some Spanish blood) but also have a little Irish and English in me.  I forgot that I also had psoriasis as a kid (ankle and knee) but it cleared up when I entered into adolescence. 

I've have had my eyebrows tatooed also earlier this year and am happy with them.  But not happy with the two different derms I went to over the year and a half period when they were disappearing.   Neither derm connected that hair loss to FFA or even mentioned the possibility.  

Alice, I may look into spearmint tea as I am really nervous about stronger drugs altho' they're tempting because they have worked for some fortunate individuals. But at what long-term cost I'm not sure.  I'm sure I'll calm down and reach the point where I am not so obsessive. But until then. . .

Comment by Alice on August 16, 2014 at 6:47pm

April, I would be very cautious about spearmint when you are pregnant. It's great that your skin has clesred up tho. Congrats!

Comment by April on August 16, 2014 at 5:21pm
Linda from Cincy, I also have skin problems on my face as well as FFA. I break out in bumps and pimples on my face as well as experience flushing. Doctors have never given me a clear diagnosis but I think it is completely related to hormones as I am now about 5 weeks pregnant and my skin issues have pretty much completely cleared up! I am hoping the same for the FFA but so far my scalp is still somewhat itchy and irritated. I've also read some studies that show spearmint tea can reduce androgens. May be worth a try!
Comment by Alice on August 16, 2014 at 3:29pm

Linda, if you are interested in antiandrogens but leery of drugs, you might want to look into spearmint, either tea or capsulesi think it may be helping me.

Comment by Jean on August 16, 2014 at 11:48am

HI Clincy

I have mild rosacea and also psoriasis (hands and feet).  Although I am not fair skinned, I had Irish grandparents.  I think we are all frantically searching for links in the hope that we can come up with some form of comonality in order to combat FFA.  I'm trying not to let the disease rule my life and have had my eyebrows tatooed and just got a wig!

Regards to everyone

Jean

x

Comment by Linda from Cincy on August 16, 2014 at 11:17am

. . . also interesting that FFA seems to burn out when it reaches the area of the scalp where the hair follicles are not as sensitive to androgens as the frontal areas (receding hairline) are.

Comment by Linda from Cincy on August 16, 2014 at 11:11am

Annie, Maddy, thanks for sharing.  Sounds like you both struggled with adult acne which, like rosacea and seb derm, is a disorder of the sebaceous glands.

The sebaceous gland happens to be located in the part of the hair follicle that is attacked/destroyed in FFA and other scarring alopecias:  

     ". . .all cicatricial alopecias involve inflammation directed at the upper part of the hair follicle where the stem cells and sebaceous gland (oil gland) are located. If the stem cells and sebaceous gland are destroyed, there is then no possibility for regeneration of the hair follicle, and permanent hair loss results.

http://en.wikipedia.org/wiki/Cicatricial_alopecia

So, so. . .what??  I totally get we all need to be dealing with getting the inflammatory part of this disease under control but also want to just get to the root of the problem (no pun intended).  In all of the sebaceous gland skin problems the seb gland is irritated/inflamed by androgens, specifically DHT.  And calmed by antiandrogens.

Which is why I think a DHT blocker (like Dutasteride) may be the way to go altho' I do have serious concerns about taking something like that long-term.  Until I can find a doc who will consider prescribing Dut, I'm exploring more natural ways of reducing DHT in the body or topical rather than systemic DHT blockers/inhibitors.

I'm learning so much from this site and also lurk on the balding guy sites  (and swear I will never make fun of a comb-over again!!)

Comment by Maddy, California, U.S. on August 15, 2014 at 10:57pm

I am also of Irish, English and Norwegian ancestry...pretty fair-skinned! I have not had too much trouble with rosacea, but have struggled with adult acne (cyst-type sometimes)...well, I did for many years during peri-menopause days...it has waned off now though. I actually always wondered about the adult acne (or the treatment I received for it...Retin A and tetracycline) and FFA were related since the FFA started right after the horrible cyst-like acne I was getting during peri-menopause. 

Comment by Annie on August 15, 2014 at 10:44am

Linda from Cincy,  I'm also fair-skinned with Irish ancestry.  I've never had rosacea, but I have struggled with moderate adult acne since the age of 19, and have spent my entire adult life trying to control it.  I thought I had finally outgrown it, but the topical steroid I'm using for ffa caused  another flareup.  I've always felt that acne (or drugs used to treat it) are related to my ffa. 

 

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