Brenda - sorry I'm late in responding but congrats on your new beautiful hair! I have to share a story from this morning...

I had to pick up someone from a surgical center this morning. When I checked at the front desk to pick the person up, the lady at the desk said "Wow! I LOVE your HAIR!" I smiled and said thank you. She then said "Is it natural?" which took me by surprise for a sec thinking she meant 'is it my own hair'...then I realized she was talking about the natural curl. :) I said, "Absolutely - all natural curls!" It made me feel so good inside!

So...said patient was hungry so we went to get breakfast. An older gentleman and his wife were behind us in line and he piped up and said "I really like your hair. It's fantastic!" I was like, wow, and this guy is standing there with his wife - awkward! BUT again I smiled and said 'thank you so much!'.

Yesterday, a faculty member and I passed in the hall and he said "I really like what you've done with your hair."

I felt like this was God's way of hugging me today. I haven't been complimented on my hair in at least a decade. I've been in hiding for four years since the receding and hair loss started. Today, my confidence is way up because now I'm not constantly thinking "whose looking at my hair?" and "can they see how bald I am?" or worrying about every little breeze that blows by.

For me, getting a bonded hair piece was the BEST decision I've made in regards to my FFA. I'm so grateful!!!

Hi Norfolk Girl

If you can get to Richmond I recommend Sara Woolhead. I had mine eyebrows tattooed there and I love them xx

Check out the current Carf newsletter for an article on Mini Hair Pieces (can be used for sideburns)  www.carfintl.org

CurlyK, your happiness with your hair is bursting through in your post, what an awesome day for you! :-)

Hi CurlyK! I'm very happy for you!!!

Like you, I also have curly hair. I can still hide my AFF, but I'd like to know what type of solution you found to your situation. Is it something like Lucinda Ellery's in London? Can you post a link to the company where you got it?

CurlyK, so this piece actually replaces your hairline?  I've lost about 2 inches from above/around my ears... and a bit less at temples/top hairline... how much (and where) had you lost prior to taking this route with the bonded piece?  Thanks for your help.

Hello all. I am Celia and I started this group in 2012. I haven't been able to post for a while as my access to the site became blocked. I have much to catch up on !

I presume you all see the picture of me at the top taken when I lived in Dubai. There are very few ladies who still write here, Liz being one of them. I hope I do not get blocked again !

Hi Celia, first off I want to say thank you so much for starting this group! It has been a lifesaver with trying to deal with FFA. Glad you are able to be post again and yes, your photo in Dubai is still visible :-)

Hello Minter, I am glad you have found the group helpful. I think just knowing you are not alone is important for a start. I am not on any medication and honestly, my commitment to taking pills was never that strong when I considered the possible side effects.

I read that Belinda Hayle who created my eyebrows is no longer working, I was sorry to hear that she is not well. If anyone in Uk near London can recommend someone, I would be very grateful. Thanks !

Hi!

I just came back from my visit to my dermatologist, to share some of my experience with some doctors from California.

The result is, they all agree the treatment that I am following is the standard for FFA at the moment. I am taking hydroxychloroquine sulfate + Dutasteride + Rogain foam + hormone replacement sine I am on menopause. I have been on the program for about 5 month, not very diligently with all my travels, but I heard good news. I was examine and we also look over the previous images and it looks that I have more volume of hair in the frontal area, not where I lost hair, but just beyond that. I could feel the difference, but it was good to have the confirmation.

We also think I might have more hair in the frontal portion where I lost hair, we saw very minimum increase but there was an increase in hair. The sides are the same.

Just wanted to share!

Thank you!

Ana

Claire Julia, good luck at Lucinda Ellery's- please post how the day goes, I for one will be interested, as I am starting to think that by the spring it will be time for me to do the same.

Ana_Brazil, that is good news for you! Glad to hear your program is showing some improvement :-)

Hi, I have had FFA for 10 years and have been on this site for many years. I do not post that much anymore because my FFA seems to no longer be active. I had three major hair sheds in 2006, 2007 and 2008, but since then I have not had any major hair loss. I notice a few weak hairs now and then, but nothing like the drastic hair loss I experienced in the early years. I am not on any medication now (although early on I did try steroid shots and took doxy for a few years), except I do use a little Rogaine in the front most nights. I feel that it does make the hair that is still there a little fuller. I ended up losing about 1/2" in the front and probably an inch on the sides...but I can still cover it for the most part. I feel that my FFA was triggered by the flu vaccine. I had never had one until 2006, and my first major hair shed (temples) started about two weeks after that first vaccine. I did not connect it that year, so had another one in 2007, and it happened again...finally when I got the one in 2008, I figured it out because I always went to my derm a few weeks after that shot complaining of more hair loss. Anyway, I suspect the triggers are different for everyone, but mine was definitely the flu vaccine and I have not had one since 2008 and no more hair loss. 

Judy, Liz and Maddy, and anyone else who may be in the much hoped for burnout stage: I am wondering how your hair loss progressed. I recall reading somewhere that there was a theory that those who lost eyebrows first had a more mild case, but those who lost body hair had a more severe case. Well I lost all of my eyebrows first but have also lost all the hair on my arms and legs! So I don't know if there is any merit in that theory. But true cases of burnout give the rest of us hope, so please stay on this site for the rest of us! Thanks.

Hi Anne Louise, Yes, my eyebrows did start to go early on! I immediately started using Latisse and now use Rogaine on them nightly. I still have enough to get by. The hair on my arms is very fine and short, but it's there and I still have to shave my legs but not as often as I used to. 

Kathy, I am so sorry for you diagnosis.  I decided to share my story again in word and photo. A picture is worth a thousand words, so I am sending a photo to show how much hair I have lost.  This is not a success story.  I first saw a derm in 2006 for a pustule on my scalp.  I already had no hair on my arms or legs.  In 2010, during a time of great loss and stress, my hair thinned greatly but I barely noticed as I dealt with the death of my daughter.  In 2011, I lost my eyebrows.  I was diagnosed with FFA/LPP in 2013.  I have used clobetasol, finesteride, plaquenil, and had steroid shots.  I saw the same doctors you have seen at the U of C.  They prescribed finesteride and plaquenil.  I could take neither.  Steroid shots gave me rashes and more inflammation.  I now use only clobetasol solution because all other forms of clobetasol cause my scalp to inflame with burning pain.  I also sometimes use protopic.  I am going to start minocycline soon.  I am waiting for the holidays to be over before starting a new medication.  I will also start mycophenolate (celcept) soon.  I am getting over a viral infection, so I don't want to take the immune suppressant until I am well.  This will be my final ditch effort to save what I have left.  It has been a long journey, but I have come to more acceptance of the loss than I ever thought possible.  Kathy, send my a private email and we can connect.  I hope to help put together a FFA support group in Colorado soon.

Hi, I am a woman from Sweden recently diagnosed with FFA. I wonder if there are any other members from Sweden in this group?

/Jane

Happy New Year to everyone ! Lets hope 2017 is a good one. Glad to have you back online Celia - your group has been a great support to so many of us. Pam.

Hi Pam , hope you had a good festive time. Will have a get together THIS YEAR. It's nice to be back on the forum but I stopped checking a long time ago as I felt coping without was in a way better. So glad that this way of communicating has helped to support so many people. There is now such a lot of useful info here perhaps the derms should log on and really search for clues documented in posts regarding FFA. In order to A .....find the trigger and B ....find a cure. In the meantime, we should all find ways of making us feel good about ourselves, eyebrow enhancements, hairpieces etc. In my opinion, I would avoid meds and go for a holistic way of treating the condition. Good food, sensible lifestyle and vitamins... for those of you who are relatively new to this site, I was diagnosed in 2011, after a serious bout of pneumonia involving lots of anti-biotics and chest x rays.

Celia  

Hi, Celia and group.  I definitely appreciate the site - and the people.  It is clear that we are all "in this" together, and having that sense of community is priceless.  Celia - may I ask if you have always taken the holistic approach - and how has that helped with your overall hair loss?  Are you still able to "wear" your own hair?  I, too, started losing mine in 2010-2011.

Hi. Can you please fill in this formular and share it. Thank you so much. http://www.survio.com/survey/d/K4G7N2Q1O0B8G1D4F

Hi Bonneygirlm,  that is the dilemma with this FFA, how to hide the missing front hairline- toppers are great for the thinning on the top, if you do have thinning, but that doesn't solve the problem of the front. I am in the midst of looking at options, if you look at the thread Extensions yay or nay, maybe you'll find some info there to help you.  Some people can get tape in pieces for the hairline, I am looking into the intra lace system- in a couple of weeks I have the consultation and will report back on how it goes-