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Frontal Fibrosing Alopecia
Information
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 14 Likes
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 0 Likes
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
Trying a new approach with CBD oil...
Started by Robin. Last reply by anettemandell Apr 20, 2023. 31 Replies 0 Likes
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 4 Likes
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
Comment Wall
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Comment by MnM on April 1, 2016 at 4:38pm
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Hi Kristen, thanks for the recommendation! She's out of Dupage Medical Group in the suburbs, I'll message you with her name.
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Check out World Hair Institute in downtown Chicago, they have a similar system. It doesn't have s name because they custome make them, but the same concept.
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And I am looking for the intralace system in Chicago. Lucinda Ellery will not give a recommendation or referral. Could afford to get to NY or LA once maybe, but could not continue for the upkeep. Thank you.
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Hi MnM! I am also a younger patient in Chicago. I'm going to try to get an appointment for eyebrows here: http://studiosashiko.com/ I've never been to Vancouver and have always wanted to go (although they just opened a LA office) so I figure "Now's the time!" Their work is amazing. What doctor do you see in Chicago?
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Hi DeniseC,
I looked at Lucinda Ellery FFA information. The transformation looked stunning. Do you know if they work with curly hair? I cannot find naturally curly hair solutions that match my bio hair. What I see out there would require me to constantly flat iron my natural hair for match.
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That looks like a great option. Unfortunately Im not close to LA or NY. :( An intergrated is a wig/piece that has the holes in it so you can pull your own hair through it to mix bio hair with hair on the piece to make it look thicker.
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Hi
The intralace is attached to my own hair - anchored - by my own hair being taken through and 'knotted' to new hair. Then an entire piece of new hair is fastened onto the system and styled - that covers the bald bit at the front.
The hairline is left loose - when I wash my hair I can therefore wash under it. It is then stuck down with tape (by me, not the clinic, obviously) and provides a VERY natural looking hairline.
I don't know what an integrated system is - sorry.
Have a look on the Lucinda Ellory website. Look especially at the images, and also the explanation of the Intralace System and the bits on FFA.
Denise
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DeniseC, do you tape or glue your intralace piece to your hairline and pull your hair through the back part? Is there a difference between intergrated and Intralace? Thanks for the info!!
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Hi Gai
Intralace works for me .... follow the message trail below. It has helped me, not just in terms of self-esteem, but - ironically - to regain a sense of perspective about the condition itself. The experience of talking about my hair loss to the excellent people at the clinic (and they are truly empathic and knowledgeable) and of seeing lots of other women in similar, or much worse, situations to my own, definitely helped me come to terms with my own problem. I am certainly not thrilled, but neither am I distraught any more. And if, for some reason, I could not stick with the Intralace, then I hope I would deal with whatever happened next far better than I coped before.
Cannot recommend Intralace enough (and, no, I am not employed by them!).
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Dear Kathyt, I am sorry to hear that you have been diagnosed with FFA? I diagnosed myself from the Internet, but took 12 months to pluck up the courage to ask my GP for a referral to a Dermatologist. I spent about 7 mins in with her, she diagnosed it straight away, no blood tests, no biopsy and no empathy. This website is very supportive, and provides good information.
I was only diagnosed in February this year, so have good days and very sad days. I have lost over 2 " from front top, and about 1" from sides. I think in the next couple of months I will go and get the intralace system fitted. I hate windy days, and feel just so embarrassed, so I'm hoping this system will help with my self esteem. It has helped me a lot to know there are other women out there that I can talk to.
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