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Clueless in N.C.
Greetings! I am newly diagnosed with frontal fibrosing alopecia, and had no idea what it even was.
I am curious if anyone on here has experienced this same type of alopecia, and what I can expect? I feel as if I am sort of dancing in the dark here...
comments or advice welcome
Elizabeth
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Comment by JeffreySF on November 4, 2015 at 10:53pm
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There is a group here on AW with FFA. I would go there if you haven't done so already!
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Comment by caretothepeople on November 5, 2015 at 10:03am
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Google DermNet NZ and check out their website. It is a New Zealand based organization, but they have lots on info about frontal fibrosing alopecia. Cicatricial Alopecia Research Foundation is another one to look up.
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Thank you for the website. I will certainly go there and read for more info.
Elizabeth
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Comment by ammie on January 27, 2016 at 4:59pm
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Hi Elizabeth. I too live in North Carolina and had my first appointment in December with Dr. Olsen's office at Duke University. I am still able to cover my bald spots with my own hair but I've lost enough that I can't wear my hair pulled back without bringing some hairs forward.
It's an unpredictable disease so it's hard to say what to expect. I am just hoping to hang on to as much hair as I can. Good luck to you and as someone else suggested please check out the FFA group.There's a lot of resources there.
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