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: 602
Latest Activity: Jul 14

Discussion Forum

CARF Conference 2018 Notes

Started by CurlyK. Last reply by kevinsstelly Jul 14. 32 Replies

CARF 2018 Conference Notes:First of all, I am so glad I went to the CARF Conference! It was worth every dime I spent – a true investment in myself, but hopefully I can bless and encourage others from what I learned.The CARF staff and volunteers are…Continue

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

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Comment by Anne Louise on March 17, 2017 at 12:40pm

HI Classical Anne! My dermatologist said once you achieve the results you want, you only need to use 2-3x/week to maintain the lashes. I also found a helpful tip to extend the supply: place one drop in the cap and dip the brush in...one drop is plenty for me for both eyes. In fact I brush whatever is remaining on my hairline! Not that I've noticed a difference in my hairline, but helps me to feel like I'm doing something in this helpless disease. Best to you and yours and happy St. Patrick's Day!

Comment by Classical Anne in NC mountains on March 17, 2017 at 12:03pm

LATISSE or CAREPROST [Canadian generic] for eyelashes.

I have not been into this forum in over a year, I'm afraid.  But since there are so many newer members, I'd like to ask the broader audience.  Those of you who may have tried one of these Rx to restore your eyelashes, did you find you needed to continue it after you got the hoped for response, to maintain it?  I started it just over 2 months ago, and had such a reassuring response.  Noticed a few new lashes within a couple weeks; and in one month had the full eyelashes of my younger days!  They grew in fairly thick, dark, long and curly.  I am thrilled!  But now, I don't know if I need to continue daily, or somewhat less, or not at all.  As you may know, it is extremely expensive in the U.S., and far from cheap [but so much less] in Canada, for a tiny vial.  Well worth it to my self-esteem, though.  Just don't want to risk losing now by overdoing or under-doing.  Anyone with any experience?

Comment by Airam-FFA on March 6, 2017 at 1:17am
Thank you Wyobalance for the link. I will read up on that. I have also asked my consultant about the possible links. xOx
Comment by Wyobalance on March 5, 2017 at 10:32pm

Here is an easy to understand website.  You may want to check out a medical website also for more in depth information.  I expect more research would need to be done to determine if the mthfr mutation is related to ffa

https://draxe.com/mthfr-mutation/

Comment by Airam-FFA on March 5, 2017 at 2:36am
Hi Wyobalance,

What is the MTHFR gene?

oXo
Comment by Airam-FFA on March 5, 2017 at 2:34am
Hi Claire Julia

How are you feeling about your hair now? Hope it is feeling more comfortable. I went to see the Lucinda Ellery consultants this week. Their primary concern seemed to be customer satisfaction - (albeit at a cost) - I am sure they would sort any concerns out for you.

The LE system seems wonderful. I just need to think about whether I need the system just yet. I have lost about 2-3cms of my hairline but am constantly looking at other people's hairline to compare mine. My friends say that my hair loss is not that noticeable - but to me it is as I know where it should be. The other consideration is that with the LE system for me, it would need to be replaced approx every 6 months as the band is narrower than they would usually do. I will think about it for the time being. It is comforting to know that the LE system has been developed and I think it can be in place in three weeks. xOx
Comment by Wyobalance on March 5, 2017 at 12:02am

Oh yea, Gai, congrats on less loss the past 2 years!

Comment by Wyobalance on March 4, 2017 at 9:12pm

Hi Gai, apparently many people have a variation of the mthfr gene.  A reason for all the autoimmune diseases?  I have one copy of the less severe mthfr gene (don't have the results in front of me).  I have side effects to many meds so no meds for my FFA.  Have always eaten pretty clean, organic etc.  Take supplements.  Doing laser.  I get sheds after stress so always working on that.

Comment by Gai on March 4, 2017 at 7:48pm
Hi wyobalance, I think the mthfr gene may well be one of the many factors that contribute to autoimmune disease. The mthfr gene severely limits your ability to detoxify, especially if you have 2 faulty copies. I have FFA! And a double copy of mthfr. I have chosen not to use any medications as I will probably have issue detoxifying from them too, also the outcome from medications is not certain. Instead I have chosen an autoimmune diet, and supplements to help. Stress doesn't help. My hair loss seems to have slowed down in last 2 years following this protocol.
Comment by Wyobalance on March 4, 2017 at 11:25am

Has anyone else been tested for the MTHFR gene.

 

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