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 CurlyK on September 16, 2016 at 8:23am
I haven't slept much and my head has been itching since yesterday both my real hair I can access and under my hairpiece. I usually don't itch but I'm sure it's the stress. I have also been faithful to an AI diet lately bit got off it these last few days as I've been eating whatever was quick and available while with my dad in hospice.it shows me what a difference diet makes when you have an autoimmune disease.
Comment by Minter on September 16, 2016 at 8:09am

I am so sorry that you have lost your dad CurlyK, my thoughts and sympathies are also with you. 

Comment by Minter on September 16, 2016 at 8:09am

I am so sorry that you have lost your dad CurlyK, my thoughts and sympathies are also with you.

Comment by DeniseC on September 16, 2016 at 4:58am

So sorry to hear your news, but (as probably most of us would know) it is a real blessing when the end is peaceful - makes a huge difference to your feelings now and in the future.

I know exactly what you mean about the hair - when I had the intralace system 'installed' (!!) I felt as if I had had an animal plonked on top of my head. Very strange indeed. And I too had to find out what suits me best - not the clinic who styled it in the first place, but me. So my hairdresser came (to my home) and thinned it out and shaped it, again like your's - not so heavy.

Next time I have it done (shortly - I was told the actual hair would need to be replaced around 4 months, but it is now going towards 7 months - hooray!) I will know exactly what to ask for.

It certainly took me a while to stop being aware of the new hair, though. I felt as if everyone was watching me - they weren't of course, or if they were, it was wondering why I looked different. I don't think of it now - it is just part of me. The only time recently that it has impinged on my consciousness at all (other than when washing it, etc.) has been when it has been very hot, and then it is not the hair per se, but the tape at the front. I would very much like to tear that off when the temperature soars (yes, England does get very hot, too!) - but stuggle on! It is worth it.

Hope the next few days - and all the ones after that - are okay for you and your stress starts to diminish.

My thoughts are with you.

Denise x

Comment by CurlyK on September 16, 2016 at 2:05am
My dad passed about 2 hours ago. Thankful it was peaceful. I am peaceful.and I'm getting more used to my new hair piece each day. Those who don't know are telling me how they love what ive done with my hair. I just smile and say thanks!
Comment by Minter on September 12, 2016 at 12:58pm

CurlyK, I am happy that you have an awesome hair dresser and it sounds like you are getting more accustomed to wearing it.  I am so sorry for what you are going through with your dad & Anne Louise, I am also very sorry for the loss of your own dad, life throws so much at us to deal with and then to have to have this hair thing on top of it all, well it can become a little much sometimes and it is admirable how you are coping with it

Comment by Sad in chicago on September 11, 2016 at 8:35pm

So delighted it all is working out for you and you feel better about how the piece looks.  Roller coaster for sure....but the best part is when someone you haven't seen for a long time will say how terrific you look and "I love your hair!"  I die and laugh inside every time.The funniest part is that you think everyone notices every little thing, but I am learning that they forget, and further, are usually so focused on other things that they don't notice at all.  It is just wierd because you  (we) want everything to appear seamless and as it always was.  

Comment by sallylwess on September 11, 2016 at 7:23pm

CurlyK, I've been so touched by what you have written the past few days.  I totally understand what you have said.  You are so right when you said that not having hair is traumatic and then getting hair is also traumatic.  That about sums it up.  We hope for hair that will be just like our own, but of course, it isn't.  That is another whammy that hits us unexpectedly.  It is a gift to have a hairdresser that understand you, knows your "look," and if you trust her that makes it all so much better.  Take care.  It is a roller coaster ride for sure.

Comment by CurlyK on September 11, 2016 at 2:53pm
Thank you everyone. My hairdresser did a really great job at shaping the hair piece. It is human hair but the shape of it was wrong for my face. It completely overwhelmed my face. Now it is Back off my face and looks more natural. I trusted her to do it as she has cut all sorts of wigs and hairpieces as well as human hair. Because ive been with her so long she didn't even charge me. Of course that made me cry all over again!. Funny, not having hair is traumatic and now having hair is traumatic! Lord get me off this roller coaster!
Comment by Sad in chicago on September 11, 2016 at 12:15pm

CurlyK -- Is your piece human or synthetic?  In my experience, it might be best to go to a wig hairdresser, as the pieces usually do better with them, especially synthetic.  I know your hairdresser knows how you wore your own hair and so feels they can duplicate, but it is not exactly the same as real hair (even if the piece is real hair) when thinning out and shaping.  And remember, it won't grow back so don't let them do it too short!  Better friends and colleagues should ask "what's different, or you look wonderful" than it being too short.  

 

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