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Comment by Heidi Short UK on May 8, 2013 at 3:34pm

Celia when I come to your house on Wednesday, I have to change at Reading, do you know which platform I need to be on to catch the train to Burnham? I will find it if you don't know, but it might help to point me in the right direction! Looking forward to it!
Liz your hair looks great, and I did look up that lady and she looks very similar to that country singer I was talking about. I don't know if they have FFA or just very high hair line.

Comment by Alice on May 8, 2013 at 8:52am

Pam, I have also debated trying Rogaine, but am not quite ready to take the plunge, maonly because you have to keep using it. My local derm thinks the hairloss at the sides may not be FFA, due to the lack of obvious inflammation but it looks to me like all of us have the same problem - bumps on top but more hairloss at the sides. I have an appt at Baptist Hosp in W-S, NC in Feb, so plan to wait for a 2nd opinion there. I stopped coloring my hair when my scalp was very irritated and it's gotten thin, dry and frizzy. I've tried thickening shampoos and conditioners but can't tell that they do much.

Comment by Liz on May 8, 2013 at 8:37am

I have just seen a lady on the news who looks like she has FFA. I googled an image of her and it looks like she has a receding hairline and temples. Her name is Kathryn Smerling and she is a therapist. Have a look and if a few of us feel this might be the case I think I will write to her. She must be well known in her field of work and that may be helpful in our quest for my knowledge/research of this condition. Anyway, have a look at her image and let me know what you think.
xx

Comment by PJ - MN, USA on May 8, 2013 at 12:16am

Wow Liz - you look great!! I would never have guessed you had FFA. Enjoy your new style. Thanks for sharing your photo.

Christiekd thanks for sharing your info. Good to hear when someone has good results with the meds. Our hairdressers/stylist do play a very important role in all this.

Comment by PamW San Diego, CA, USA on May 7, 2013 at 8:31pm

Liz, you look great! It is so important to have a stylist that will take the time to help. All I see are your beautiful eyes.

Welcome to the group Christie. I am debating about using Rogaine for women. My derm says that some of the hair loss I am experiencing may not be entirely due to FFA, as there are many other reasons for hair loss. Do you feel that Rogaine has helped with the volume of your hair? I know hair cannot grow from scarred follicles, but I would like to thicken up what I have. I would appreciate your opinion.

Comment by Simone NJ USA on May 7, 2013 at 6:15pm

Welcome Christiekd! Liz, you look great!!! Wish I could go to your stylist!!! Also, Celia...thanks for bringing the questions to Dr. Harries...hope you are doing better....xx

Comment by Celia on May 7, 2013 at 4:16pm

I meant was it easy to find us - not is....another typo !

Comment by Celia on May 7, 2013 at 4:15pm

Liz - you look amazing ! What a good cut ! I am looking forward to meeting you all so much. christiekd - nice to have you onboard. Hopefully docs will begin to collect and use information to help people like us. Trouble is - it is rare and we are all very unfortunate to have this. Keep communicating - was is easy to find us ? We have been around for almost one year now on this site. X

Comment by Debs on May 7, 2013 at 3:17pm

LIz, your hairdresser has done a fab job, your bob looks lovely and your hair really falls nicely. You can't tell you have hair loss.

Christiekd, welcome to the group, it is very uplifting to read that you have had success with these meds and that your FFA has responded to treatments. Great stuff. XX

Comment by christiekd on May 7, 2013 at 2:36pm

Hi All! I am new to the group, but not new to FFA. I was diagnosed 2 years ago although I suspect I have been losing my hair for at least 5 years. It started with my eyebrows thinning first and then my noticing hair loss around my face. I was diagnosed with Alopecia, 3-4 years ago, but my doctor didn't say what kind or give me any information. So I just went on with my life because she acted like it was no big deal and thought my hair would grow back when I wasn't stressed out any longer (from a family tragedy). Finally, I went to a derm when I was still losing hair two years later who did a biopsy and found FFA. I have been using with Plaquenil, Clobetesol, tryimciclone on my eyebrows (topical steroid), doxycycline and Rogaine (which I use on my hairline as well as my eyebrows). My eyebrows have grown back to almost normal. I do dye them darker because they grew back blonde and I do enhance them with makeup. I have also had steroid shots a few times to my scalp and eyebrows when I have had flareups. When I first started treatment, I responded great and didn't have any more hair loss for one and half years - also, I did have some regrowth in my eyebrows. Then another family tragedy occurred that caused me to flare up again. That was last year. I have had more trouble responding to the meds this time around, but I think it is pretty much under control right now. My derm (who I love) did add topical protopic to my other meds recently, so we will see how that goes. I use that on the days that I don't use clobetesol.

Anyway, I wanted to respond to Liz about finding a good hairstylist. Mine is the best. I was her first patient with FFA, but she has been my stylist for 20 years so I told her right away when I was diagnosed. Now she has another client with FFA and has done a lot of research on the topic. She does my highlights really early on Saturday mornings when the salon is empty of other stylists. She gives me great haircuts, and we are able to hide a lot of my hairline issues. However, I do wear a lot of baseball caps and other hats in the summer, especially after swimming or to work out or play tennis. To me, my hairline is much for noticeable at these times. Luckily, though, I work in a health club, so I am always in athletic gear anyway.

I wanted you all to know that I am very inspired by each of you and your stories. I was feeling pretty alone with this disease as it is so rare and women who have it don't talk about it freely (understandably). Thank you all for being here and willing to share.

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