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

Views: 98

Comment by JeffreySF on November 4, 2015 at 10:53pm

There is a group here on AW with FFA. I would go there if you haven't done so already!

Comment by caretothepeople on November 5, 2015 at 10:03am

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.

Comment by ElizabethRYT on November 5, 2015 at 10:19am

Thank you for the website.  I will certainly go there and read for more info.  

Elizabeth

Comment by ammie on January 27, 2016 at 4:59pm

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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