I am 41yo and have always been one of those lucky people, where I had thick/wavy very pretty hair. It was one of my best features. I didn't fuss over my hair, it was really easy to manage. I have never even colored my hair, nor do I blow dry. So my hair was always strong and healthy. I could shower, throw it up in a clip for the day and head out the door. I was given the devastating news that I have frontal fibrosing alopecia on 2/6/20. When the derm told me this my mind went blank and I was only hearing every other word she was telling me. I had been doing some research on various alopecia's and knew this was a scarring form of alopecia. Having a background in pharmacy, at this moment, I am not very hopeful with the treatments of choice to put my condition in remission. I am literally shocked that I can't find any studies where they have tried some form of a biologic (specialty medication - eg, Humira, Enbrel, Cosentyx, etc..) to treat this disease considering it is a autoimmune condition and in a lot of cases overlaps with diseases such as Psoriasis, Psoriatic Arthritis, Lupus, etc... Needless to say I have a lot of questions for my derm when I see her during my first appt this week, to get my stitches out from the biopsy. Since we caught this condition so early, all I can do is pray that I see some results from the current medications of choice used to treat this disease. I am very appreciative that I found this website b/c hearing your stories, although difficult to hear, were also helpful for me to know there is a community of people out there that I can turn to with questions/concerns. Thank you for sharing!!! You are all very strong/determined individuals and I am finding strength through your experiences. I am scared to start this new journey in my life and very scared this will be passed down to my little ones some day. All I can do is put it in Gods hands and just know everything will be ok.
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