Frontal fibrosing alopecia.......newly diagnosed and now devastated.

Having recently had my worst fears confirmed it seems that I personally am going to end up looking like an alien............there again it could be worse I guess lol lol!

But seriously it isn't a joking matter and though it isn't life threatening as such...the personal devastation is huge because, as with so many other woman I used to have really lovely hair and it truly was my crowning glory

Now my frontal hairline is receding and ....fast!

Having a scalp bopsy at the end of the month....... told my dermatologist will be willing to be a 'case study'......but at the end of the day I truly believe it could be a case of the blind leading the blind here. It doesn't seem to be treatable, can be sporadic in its active/dormant states and the effect on my confidence, self esteem, even my own sense of worth has been like having the rug pulled from under my feet...............arghhhhhh!!!!!!!

I hate looking at my hair in the mirror, dread windy days and even though for now my hair style seems to be doing a good job of hiding it ( well on a good day) I dread what happens next..............a wig was suggested but does that mean shaving off the hair at the back of my head or what.( 0h so not ready for that yet but how do you know when is the right time?)

Any one out there fancy a chat/moan/exchange of ideas ......updates on research of which there seems to be very little.

Please get in touch.....regards