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 PBsunshine1 on June 10, 2018 at 8:51pm

Curly K can't wait to hear from you

Comment by CurlyK on June 10, 2018 at 5:18pm

I’m sooo glad I went to the CARF conference! Full of helpful, empowering information and I made so many new friends! I’m working on my discussion post now. I have a two hour flight home so I hope to get it mostly done for you. Hugs to all!!!

Comment by Anonymous on June 10, 2018 at 10:08am

Hi Robin, I am looking at CBD oils on line. It looks as though they are taken by drops on the tongue. Is that how your CBD oil is normally used? And you are trying the drops on your hairline? Do you take by mouth, as well? I'm looking at 100 mg./the lowest available. Thank you!

Comment by Minter on June 9, 2018 at 8:44am

I'm also now getting curious about this cannabis oil tincture after reading @Robin's post-

I guess I should take a look on google and see what the story is, I'm in upstate NY and I am pretty sure I might be able to get it with a prescription here, well maybe, I dunno? Anyway, it is supposed to be a bit like a wonder drug from what I've been hearing about on the news and such. 

Though I was down in NYC not so long ago and could've just stood on a street corner breathing in the smoke from the weed being smoked all around me now that it is not being prosecuted down there, ugh it stunk so badly- hate that smell!! 

& @Halfbakedwho, I'm also sorry about your sister too, a little support goes a long way, especially when siblings are halfway across the world from each other :-( 

@ Miss Mymble, interesting about low dose naltrexone, have to google that one too! Seriously, how was I ever able get through one single day without google? 

Comment by Miss Mymble on June 9, 2018 at 7:24am

I've just downloaded a screenshot from donovanmedical.com about Low Dose Naltrexone. 

Am I the only one who is curious and interested in LDN for FFA? Or do some of you have already tried it? 

Comment by Miss Mymble on June 9, 2018 at 7:22am

Comment by Miss Mymble on June 9, 2018 at 6:54am

Thanks for welcoming me into your group. It sounds indeed like this is a warm and supportive place. 

@Halfbakedwho, I'm so sorry you received such an insensitive response from your sister, when you reached out for help. I guess some people don't really understand how tough this situation is and that it actually takes courage to ask for help. I'm sure some people also get confronted with their own vulnerability, shame and lack of self-worth when being confronted with this issue (even when they are not the one dealing with it firsthand) and to protect themselves from these feelings response in a harsh way. Well, maybe that's not the case with your sister. I'm just rambling.. Nevertheless, a response like that is not what's needed. 

Cannabis oil with THC is not legal in Denmark (yet..), so I just try an oil with CBD and CBA. It still should have anti-inflammatory benefits. Is an oil like that legal in France? If so it may be worth a try. 

@CurlyK, it's so cool you attend the conference and are so generous with what you want to share from it. It's greatly appreciated! It sounds absolutely wonderful the way you describe the way you ladies relate to each other at the conference. 

Comment by CurlyK on June 8, 2018 at 9:47pm

We had a reception tonight at the CARF conference where I met some wonderful ladies! It has already filled my heart up to meet people who are part of this crazy bizarre thing called cicatricial alopecia. It’s like meeting your long lost best friend and instantly diving right in like no time has passed. Tomorrow will be a long, full day of information. I look forward to sharing what I learn with all of you beautiful ladies! 

Comment by Halfbakedwho on June 8, 2018 at 5:08pm

Welcome to Miss Myble! 

I just got off the phone with my sister who lives in Vegas, who refused to look for cannabis tincture for me (legal there). I can understand that, but it was the mockery and sarcasm that weren’t so great. You know. 

Happy CARF weekend, CurlyK! I will be thinking of you and Wyobalance, you lucky hairless ducks. Said with all respect and affection ; )

Comment by Minter on June 8, 2018 at 11:00am

Hi @Miss Mymble, I am so sorry you are here- but you've found a great group for helping to deal with this horrible FFA, these ladies are awesome and I totally agree, life is too short to deny yourself chocolate and ice cream!

@CurlyK, thank you again for sharing with us what happens at  CARF :-) 

@Halfbakedwho, I hope you can find a good hairdresser closer to home and ugh, yes- your commute sounds awful :-( 

 

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