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Comment by CurlyK on May 15, 2018 at 9:52pm

Airam, yes I am attending the CARF conference. I’ll be going back through these posts to create a list of questions. Hopefully I can bring back some answers. 

I had my hair “done” ten days ago. Where they take my bonded piece off, clean it, my scalp, and then re-adhere it. I took pics with it off to have a record of what has happened. I’m not feeling brave enough to post here yet. It’s rather sobering...

Comment by Lynn555 on May 15, 2018 at 8:39pm

@Illustr8r,

No I don't have any smooth white skin or numbness. I just have lots of vellus hairs. And then in my sides there seems to be follicules that are empty or have smaller than normal hairs. It is weird. 

Comment by Beez on May 15, 2018 at 3:37pm

I live 45 minutes outside of Philadelphia and considered going but it’s $250!! Ridiculous

Comment by illustr8r on May 15, 2018 at 2:03pm

@Lynn555 Your sides look like mine, thinning. The "moth eaten" look is along my widow's peak. Do you have the weird smooth white skin along your forehead starting about an inch from your hairline? That's the scarring and I've noticed lately that it feels numb.

@BubbaLu I've had bangs my whole like and mine no longer lay the same either. Drives me crazy. Very wispy. My temples are far back so the gaps on either side is noticeable in the friggin' wind. My "good hair" is pushed forward to give me sideburns for a pixie cut. I'm managing but wish I didn't have to-stupid disease.

@Airam Last time I was at the dermatologist I actually had improvement. I gained 1/4 inch and the hair had covered where she done the biopsy. I am doing better than when I was first diagnosed.*knock wood* I've had this mess a lot longer before I was diagnosed...not burn out but maybe it's going to be way slower going than before. Who knows-and that's the problem. *sigh*

Comment by Airam-FFA on May 15, 2018 at 12:19pm

Hi Everyone,

I have not been able to post comments for a few weeks, but I have enjoyed reading your posts and knowing that we are all here for each other.

I saw the Dermatologist again yesterday.  She is convinced that my hair has not receded any further since the last time that I saw her ? neatly a year ago. I did not agree with her, however, she measured from my eyebrows to my hair line and said that the measurements were the same as last time! She used a ruler - so not very scientific - a tape measure that could curve over my forehead would have been more accurate. :(

The lady, who is attending the Carf Conference (I think it might be Curly K), please would ask if the Specialists have heard the results from the Research that was carried out at St Guy’s Hospital in London in December 2016/early 2017.  Apparently, they are waiting for the results to be published in one of the Medical Journals. It will be interesting learn about that the research turned up.

Best Wishes to everyone - try to keep smiling.

xOx

Comment by BubbaLu on May 15, 2018 at 11:21am

Christi Q and Lynn55,

You are both beautiful women and I am sad we are in this sorry club together.  For what it's worth, it is somewhat comforting to know I'm not in this alone, thank you for being brave and posting pics.  My FFA has not receded to the point other people probably notice but I certainly do notice.  My bangs just don't hang right.  And it's the nagging worry that keeps me uptight - how far back will it go?  I'm trying to just breathe, take one day at a time and adjust.  Also, I am all in on the Ketosis diet which is supposed to be good for a lot of things like auto immune, diabetes, etc.  The inflammation has lessened so maybe it's the diet or the steroid injections.  And, I've lost 8 lbs eating lots of fat!  There is a great book explaining how it works and how to get started.  Eat Rich, Live Long.

Comment by Afraid on May 15, 2018 at 10:05am

Hi Lynn55  

i wouldn’t like to say categorically but it doesn’t look the same as my FFA.  You don’t seem to have a band of hair loss, or the ‘moth eaten’ appearance of FFA or patches of loss.  Do you think it could be generalised thinning? 

Comment by Lynn555 on May 13, 2018 at 1:37pm

Sorry all for bombarding you with pics! Does it look 

Ike FFA? 

Comment by Lynn555 on May 13, 2018 at 1:36pm

Comment by Lynn555 on May 13, 2018 at 1:22pm

There is a pic below, I know it is ridiculous but its from 6 years ago showing how much thicker my sides were. 

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