MnM. Yes it a system from Lucinda Ellery. I've had a lot of lovely comments about my hair over the past few days, since having it done. I'm also getting used to having hair blowing in my face for the first time in about 4 years!

Hi Kat. The system covers the bits that are bald but also, due to the length of my own hair, it covers the remainder of my own hair. There is a mesh covering the bald bit and they pull your own hair through at the edges to secure it. They then connect and sew in real hair which closely matches your own. I wanted a natural hairline so right at the front I do have to put a little piece of tape to hold it down. The system is expensive. It's around £2000 for the initial system which should last for 2 years. However you have to have the connections adjusted every 2 months and they charge an hourly rate. A friend of mine has the same system. She has had it for a few years and her hair looks lovely. She swims in the sea every day and so it seems quite strong. If you would like me to email you some photos message me and let me know your email. xx

Hi Kat. Thanks for the friend request. I see that you sent me your email. When I pressed yes to accept your request your email address disappeared. Please can you send me it again. How fabulous that you live in Brighton too! :) xx

LIz,

Congratulations on finding a solution. It is wonderful that you share this with us. Happy Holidays.

Can anyone share whether they have multiple types of alopecia  in addition to FFA?  I was originally diagnosed with FFA only, yet now my derm believes I have a secondary form of alopecia which is resulting in major shedding on my whole head.  There are days where I truly wish I had the courage to shave it or that it would simply all fall out.  At least then I wouldn't worry any longer nor would I feel in limbo with one foot in and one foot out of the alopecia doorway. 

My derm also said I may have other hair loss issues like thinning but didn't mention any alopecia except the diagnosed ffa!!   I'm in the age group where I believe many have thinning issues-ugh!  Hope this helps.

I know of someone that has ffa and androgenic loss.  Her hair was thin most of her life.  Minoxidil has worked wonders for her thinning, though she continues to have the ffa loss.  It's amazing.  She has additional hair throughout her scalp, about an inch long now.  That worked for her (androgenic only).  May not work for everyone as we are all different.  

Thanks for the replies about other alopecias in combination with FFA.  I continue to shed, but since a brief prednisone pulse and starting finesteride (1 month in), I'm seeing less shedding; I would also swear I seen new  growth (could it be?) at my temples and just above there at the frontal/side hairline.  I'm also using Cordran lotion on my entire head overnight with a shower cap every other day.  I may try minox on the off days, although my doc has never even mentioned trying it.  FFA is a chore!  If I see results and slow progression until burn out, it will be well worth the hassle.   Best to all fighting this fight.

I know of one woman that swears hair dye triggered her hair loss.  She also has a number of other allergies and sensitivities.  I don't know of anyone else that has said that they thought hair dye was related to their hair loss.  

Looked up hidrossiclorochine, apparently that is the same as Plaquenil which is used in the U.S.

Dear FFA Friends,

I hope your Christmas was a great one.  One of the best things I did for myself this year was to have this custom hairpiece made.  It is designed to cover just the front portion of my forehead and the hair in the back covers the bald places I have developed at the crown.  It is handmade, synthetic hair with a lace front.  The hair strands were picked to match my own hair.  The side curls are my own hair. If you look at the back of the hair in the mirror, you can see my own hair in the back.  I love it!  Thanks to Jennifer at Strands for this.   http://www.strandsmedicalwigs.com

Hi Sally,

you look wonderful!  No one could ever guess. It came together seamlessly. Thank you for sharing this triumph with us.  Please tell me the process of attaching it, and how long do you wear it before removal. I love hearing (and seeing) stories of people who have figured out how to live with this awful condition. 

Jen 1, thank you.  I attach it with sewn in clips on the sides near the top and a bit of two sided medical tape in the front.  I wear it during the day.  I style my hair as usual, attach the hair piece, blend it together, and I'm on my way.  

Thanks Sally. I am looking at the photo (the front) and trying to figure out which is the piece and which is your own. Is it the side swept bangs and the upper portion of the temple area all the hair on the hairpiece?

Yes, Jen 1.  The side swept bangs, which I have sense had cut into bangs, and the upper portion of the temple area are hairpiece.  The curls below in the front are mine.  The piece is not a topper.  A pattern was drawn on paper of the portion of my scalp without hair.  This was used to form the base where the hair was attached for the hair piece.  I experimented by cutting up old wigs before we made the final piece.  

Should say, "since cut into bangs."

Sally,

This piece seems to really fit the needs of our group. Great job.

Thank you for sharing sallylwess!  I am just at the point of investigating getting something like this.  It looks great!

Ladies, congratultions to Sallylwess!  I have been mentioning and offering advice on a custom clip in piece since I joined.  They save the day and I feel so much better while wearing mine that I won't leave the house without it.  However Sally, yours looks even better and more natural than mine.  Great job!  Happy Holidays.

yes my research indicates it could happen all over again, and the expense is huge.

Hi,

I'm new to this site and found the comments very helpful in terms of 'not being alone'.

I developed FFA 2-3 years ago, age 51, at exactly the same time I was diagnosed with coeliac disease, although the FFA was only recently identified. I started by losing all the hair on my arms and legs, then gradually more typical symptoms appearing around my face, most recently the eyebrows. Sounds pretty standard from reading the comments below.

I'm wondering if anyone else has the same connection between these auto-immune conditions and

if high levels of stress make it worse? Seems to for me.

I've never equated my FFA with dying my hair.  I do, however, have long thoughts about my use of Sambucol/Elderberry Syrup (an immune system booster that is a flu and cold preventative) as triggering/progressing this autoimmune disease.  Also, and I see a lot of buzz about this on the web in a frenzied fashion, I used WEN hair products for a while and then started having major hair loss.   I don't know...if I could figure out why some people's immune systems go haywire, I'd be a wealthy woman! 

Stephanie

Diagnosed 4/15.  48 y/o.  Not menopausal.  Have lost 1 to 1.5  inches at front, and over 50% thinned throughout.  Currently on prednisone pulse to stop a major shed that began in October, Cordran lotion and finesteride 5 mg.  Tried doxycycline (gave me ulcers) and plaquenil (started the second big shed in October) prior to current regimine.

I wanted to share something I learned today with all of you.  For those who may be interested in an interwoven hair system such as Linda Ellery, but would find it impractical to travel far for initial and maintenance visits, a hairdresser friend told me about Evolve hair systems.  This is also an interwoven system (integrates with your hair, no shaving, no tape, etc...)  meant for volumizing at the crown, yet it looks like it would certainly work with many stages of FFA too.  It is semi-permanent and acts as your own hair (swim in it, wash it, dye it, curl it, etc...).  Another great thing about it is you don't have to travel to a proprietary hairdresser to have it put in or maintained.  Even in my non-cutting-edge state, there are 7 salons who have hairdressers trained in working with the system!   And new salons are adding the product all the time.   If interested, go here and click the Volumizer tab:  https://www.evolvinghair.com.  For those that need something that fits into/doesn't disrupt an active lifestyle, this may be an option.  I have seriously considered Linda Ellery's product and wondered how I'd find the time and money to fly back and forth to either California or New York every couple of months. 

Thanks for the link SJC that looks like the best thing I've seen so far, and you're right, there is a salon in my area!

Wow, plastic eyeglasses! That's a thought! I have wore glasses since 6th grade although not all that time was I wearing plastic frames but many of those years I was and am! That just puts a new spin on things,doesn't it!

Anyway I was wondering if anyone has used this product before? Looks interesting....

http://www.justnaturalskincare.com/hair-loss/alopecia-hair-loss-tre...

Let's Solve This, I think you and I have been on the same wave length.  I recently have been having such neuropathy that has really bothered me at night.  I also wake up so hot that I can't tolerate it.  I sleep on memory foam bed and used a memory foam pillow for a long time.  I recently stopped using the pillow because I wondered if it had anything to do with the hair loss.  Quite honestly, I think there are many factors that play in to FFA/LPP.  I don't think it is any one thing.  I think some of us are more sensitive to environmental/social/stress stimulants that cause our systems to go haywire.  I think genetics play into it. If eyeglasses caused the problem then I'd see many more in my social group with the same hair loss.  I personally rarely wore glasses until my late early 50's, and then I only wore them to read.  I dyed my hair, but so did my sis.  She has her hair.  I never had a hysterectomy.  I did take hormones.  The list goes on.  I do wish we had answers.

Ann Wilson, I think that product might help soothe.  I see it has the same ingredients as others have suggested in the past.  

I'm sceptical about plastic in something which really doesn't touch the scalp but wouldn't discard the idea that something you put your head on for hours every night could cause a problem. However, in my case I could easily believe that it was the HRT I was on (and still am on). Specifically the testosterone which was apparently at too high a level for some time. Having cut it back I definitely am not noticing so much hair loss. Of course that may just be a coincidence but I have read that if testosterone levels aren't properly balanced by oestrogen there are likely to be side effects. I had none except, maybe, the hair loss. Seeing many of us are at an age when hormone levels are likely to fluctuate wildly it may be that this is one reason (but only one of many). I hope not because I'm not sure that I'm ready to give up the benefits of testosterone and having experimented with the dose I know it works for me.